#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Patient Chat @patientchat You can find the topics we’ll cover on today’s Empowered #patientchat: https://t.co/kAD6UVro0e |
| Patient Chat @patientchat Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients. |
 | Social Health Network @socialhealthnet @LAlupusLady #patientchat https://t.co/2xbXLxaKlm |
| Social Health Network @socialhealthnet RT @patientchat: Join us in a few minutes for the Empowered #patientchat. Info/Topics: https://t.co/kAD6UVro0e |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
 | Amanda G @LAlupusLady RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of… |
 | Global Parents for Eczema Research @eczemaresearch I'll be at the Empowered #patientchat on Fri 7/9 1pm ET. Join me! https://t.co/sxd6huvnti via @power4patients |
 | 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos 👇🏼👇🏼👇🏼 #patientchat |
| Social Health Network @socialhealthnet @eczemaresearch @power4patients Thanks for joining us for today's #patientchat |
| Patient Chat @patientchat Happy Friday everyone! I’m Nykema from @power4patients and I’m looking forward to today’s #patientchat 😊 |
| Patient Chat @patientchat We are so happy and honored to have Seth from @wegohealth joining us today! #patientchat |
| Amanda G @LAlupusLady Hey @patientchat @wegohealth and friends… #PatientChat https://t.co/AXojnhmTba |
 | The Sickle Cell Health Coach @scdhealthcoach I'll be at the Empowered #patientchat on Fri 7/9 1pm ET. Join me! https://t.co/ImC0woP8q7 via @power4patients |
| Amanda G @LAlupusLady RT @TiffanyKairos: 👇🏼👇🏼👇🏼 #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @patientchat My name is Tiffany Kairos - I'm an #epilepsy advocate, blogger and the founder of @TENofficial living with epilepsy for over 10 years. 💜 #patientchat |
| @ I am Sarah, a Patient Leader with @wegohealth I focus on patient advocacy and empowerment. | |
| Social Health Network @socialhealthnet Hi everyone! Seth here from WEGO Health and I'm looking forward to today's #patientchat. I am also a fellow patient advocate who lives in the Boston area 🙌 |
 | endoQueer @endoQueer @patientchat Hi! I’m Les with endoQueer and glad to participate in this #patientchat |
| @ RT @wegohealth: Hi everyone! Seth here from WEGO Health and I'm looking forward to today's #patientchat. I am also a fellow patient advocat… | |
| Patient Chat @patientchat [REDACTED USER] @wegohealth Hello Annie-Danielle, so glad you can join us today! Looking forward to conversing with you. #patientchat |
 | Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR #patientchat Hello Everyone!!! Not sure how this works. LOVE and good morning. I am an advocate and activist, survivor, YOUR SINGING ADVOCATE!!! #TOGETHER https://t.co/tEuRyAOoRc |
 | Adam Johnson - DadVocate @RareDiseaseDad @patientchat Hi everyone. I'm Adam, a dad who is also #raredisease patient & advocate...a Rare Disease #DadVocate. Great to be here with everyone for #PatientChat today! |
 | Barby Ingle Official @BarbyIngle Hello, I am @BarbyIngle - Chronic Patient, Active Health Advocate, Author, Cheerleader of Hope and oh, so much more. #IAm #patientchat https://t.co/1LJxChjZWJ |
| Patient Chat @patientchat @TiffanyKairos @TENofficial Hi Tiffany! Hope all is well. It's always a good time when you join us! #Patientchat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR RT @TiffanyKairos: 👇🏼👇🏼👇🏼 #patientchat https://t.co/VJKDLIurbE |
| Social Health Network @socialhealthnet @patientchat @power4patients Hi Nykema! Cannot wait for today's #patientchat https://t.co/BblrQ8XTs7 |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @patientchat @wegohealth Hi Seth! So great to be with you here today! #patientchat |
 | John Novack @J2Novack Hello #patientchat community, John Novack here to follow along and learn. |
| Patient Chat @patientchat @lilithacacia @wegohealth Hi Sarah, thanks for joining! #patientchat |
| endoQueer @endoQueer @patientchat I’m in the DC region and I advocate for myself and other LGBTQIA+ individuals with endometriosis and similar illnesses. #patientchat |
| Social Health Network @socialhealthnet @BarbyIngle So happy you're joining us today Barby! #patientchat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR #PATIENTCHAT GLAD TO BE HERE!!! LOL, trying to see how this works. |
| Patient Chat @patientchat @endoQueer Hi Les! Happy Friday. We're glad you could join us today! #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
 | Alan Brewington @abrewi3010 Alan here. My neck is hurting, I’m exhausted, and completely deflated after hearing the sad news regarding Erin (@GilmerHealthLaw). Let’s start the ideation…I think. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @TiffanyKairos @patientchat @TENofficial Hi Tiffany! Good to see you here. Looking forward to learning from you today, as usual! #PatientChat |
| Patient Chat @patientchat Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical needs and history #patientchat |
| @ RT @patientchat: Today's chat is solely informational and not a substitute for speaking with a doctor who's familiar with your medical need… | |
| Social Health Network @socialhealthnet @J2Novack Hi John! Always great to see you at these Twitter chats. Go Sox! -Seth #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines at https://t.co/XO3X3JyAcV #patientchat |
| The Sickle Cell Health Coach @scdhealthcoach RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of… |
| Social Health Network @socialhealthnet @TiffanyKairos @patientchat Thank you for joining us today Tiffany. You are a rockstar advocate! #patientchat |
| Amanda G @LAlupusLady Excited to join @patientchat and @wegohealth today. I’m Amanda a passionate #Lupus patient leader/warrior/advocate from LA and proud to be recognized with a few #WEGOHealthAwards nominations. #patientchat https://t.co/3xSuZ7T9rN |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos Ecstatic to be here with such empowering Patient Leaders! #patientchat 💜 https://t.co/I6Tln23GkD |
| Patient Chat @patientchat RT @wegohealth: Hi everyone! Seth here from WEGO Health and I'm looking forward to today's #patientchat. I am also a fellow patient advocat… |
| Alan Brewington @abrewi3010 @J2Novack Hi John, how are you? #patientchat |
| Amanda G @LAlupusLady @J2Novack Hi… #PatientChat |
 | Patsy Hinson @patsyhinson #patientchat Patsy joining from NC. Ovarian cancer and polio survivor. Happy to be here. |
| Social Health Network @socialhealthnet [REDACTED USER] This is the current weather today. Hoping it's better weather where you are! #patientchat https://t.co/zmAOwAXmSv |
| Social Health Network @socialhealthnet [REDACTED USER] @patientchat #patientchat https://t.co/OxYwUELSYY |
 | It'sME(Jaime) @exceedhergrasp1 Re: the @wegohealth chat today: follow the hashtag #patientchat to see responses from me and other nominees for the WEGO health awards. |
| Patient Chat @patientchat Today's #patientchat is a “Transforming Healthcare as a Patient Leader” Empowered #patientchat https://t.co/kAD6UVro0e |
 | Infirmity Overcomer @InfirmityO @wegohealth @patientchat happy Friday and I'm looking for to this for the first time #patientchat |
| @ RT @patientchat: Today's #patientchat is a “Transforming Healthcare as a Patient Leader” Empowered #patientchat https://t.co/kAD6UVro0e | |
| Social Health Network @socialhealthnet @DimaHendricks Thanks for joining us today Dima! #patientchat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @patientchat Got you!!!! New to this #patientchat , so trying to understand the ways. HELLO @TiffanyKairos , my angel. |
| Social Health Network @socialhealthnet @lilithacacia Hi Sarah! We are so glad you joined us for today's #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @wegohealth @patientchat So awesome to be here with everyone!! Excited for great conversation! Love you guys!! 💜 https://t.co/CqRKc9EPhH |
| Social Health Network @socialhealthnet RT @patientchat: We are so happy and honored to have Seth from @wegohealth joining us today! #patientchat |
| Amanda G @LAlupusLady Friends and insight #PatientChat |
 | John Linnell @John_Linnell #patientchat I guess I don't understand how this works. A live Twitter chat,,,,,and I just see numerous posts scroll by saying how happy people are to be here? How do we have a robust conversation to share ideas, etc. I guess I am just too used to being on 3 or 4 Zooms each day. |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @LNGTERMSURVIVOR @patientchat Hiii @LNGTERMSURVIVOR!! Bunches of hugs to you!! #patientchat |
| Amanda G @LAlupusLady RT @patientchat: Today's #patientchat is a “Transforming Healthcare as a Patient Leader” Empowered #patientchat https://t.co/kAD6UVro0e |
| Social Health Network @socialhealthnet @patientchat Wouldn't have missed this opportunity. Thanks for having us! #patientchat https://t.co/3L0pUIBDkE |
 | Liz Hiles @mirletaliz #PatientChat |
| The Sickle Cell Health Coach @scdhealthcoach Hello #patientchat! I’m @DimaHendricks from #Boston and I am a sickle cell advocate. @SickCells |
| John Novack @J2Novack @abrewi3010 Hey Alan, I’m ok thanks. I too am feeling deflated from the news about Erin Gilmer. #patientchat |
| @ @wegohealth Always representing my passion and an honor to be involved with @wegohealth and this #patientchat | |
| Patient Chat @patientchat I will introduce new Topics with T1, T2... Please include corresponding T# at the front of your answers - hard to remember but helpful #patientchat |
 | Defeatparkinsons @DrmariaDe @wegohealth @DimaHendricks Morning everyone - this is Maria just joining to meet everyone and learn from one another #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @LAlupusLady Yess!! What an awesome group we have here! 💜 #patientchat |
| @ RT @patientchat: We are so happy and honored to have Seth from @wegohealth joining us today! #patientchat | |
| @ RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at the front of your answers - hard to remember… | |
| Liz Hiles @mirletaliz RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of… |
| Social Health Network @socialhealthnet @DimaHendricks @SickCells A fellow Bostonian! -Seth #patientchat https://t.co/1m9oFBQhrb |
 | Janice Cowden @JaniceTNBCmets Hello! Janice from SW Florida, patient advocate living with metastatic triple-negative breast cancer since 2016. My first time officially joining #patientchat live. |
| Amanda G @LAlupusLady @LNGTERMSURVIVOR Hola Amigo. #PatientChat |
| Social Health Network @socialhealthnet @John_Linnell Hi John! This resource might help out with how a Twitter chat works. #patientchat https://t.co/x3pvSly6qb |
| Liz Hiles @mirletaliz Sorry I'm late. Coming from another meeting. I'm Liz, in Cincinnati, bladder cancer and ostomy advocate, among other things. #PatientChat |
 | Thanks Cancer! @ThanksCancer RT @patientchat: Today's #patientchat is a “Transforming Healthcare as a Patient Leader” Empowered #patientchat https://t.co/kAD6UVro0e |
| Liz Hiles @mirletaliz YEA SETH! #PatientChat |
| Patient Chat @patientchat Are you all ready for our first topic? T1 coming soon.... #patientchat |
| Social Health Network @socialhealthnet @LAlupusLady @patientchat Hi Amanda! Thanks again for joining us today and for all that you do for the health community. #patientchat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR What does it mean to be a patient leader in the community? #patientchat AH!!!!! LOVE, knowledge, or the desire to find out, patience, imagination, and creativity. https://t.co/8kmwwBJCcu |
| Infirmity Overcomer @InfirmityO I'm Catherine and I advocate for #fibromyalgia 💜 #majordepression 😉 #stillirise #patientchat |
| Amanda G @LAlupusLady @wegohealth @justagoodlife @patientchat Maybe we can get cute kid pictures from @justagoodlife (wink!) during the. @wegohealth and @patientchat conversation. #PatientChat here’s hoping. |
| Liz Hiles @mirletaliz @wegohealth #PatientChat https://t.co/Fbx8Rha6YA |
| @ @patientchat Born ready! #patientchat | |
| Patient Chat @patientchat T1: What does it mean to be a patient leader in the community? #patientchat https://t.co/sVRqgc1sHI |
| It'sME(Jaime) @exceedhergrasp1 RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at the front of your answers - hard to remember… |
| It'sME(Jaime) @exceedhergrasp1 RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of… |
| endoQueer @endoQueer @patientchat Also, I'm a #WEGOHealthAwards Rookie of the Year Nominee and excited to talk with y'all. #patientchat |
| John Novack @J2Novack RT @patientchat: T1: What does it mean to be a patient leader in the community? #patientchat https://t.co/sVRqgc1sHI |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @justagoodlife Hello Julie, LOL, trying to understand the ways of #patientchat |
| Amanda G @LAlupusLady Wouldn’t be anywhere else but here supporting Empowered Patient Leaders during the @wegohealth and @power4patients @patientchat #PatientChat https://t.co/vThl6es2fs https://t.co/1YNFwYk1M9 |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @patientchat What does it mean to be a patient leader in the community? #patientchat AH!!!!! LOVE, knowledge, or the desire to find out, patience, imagination, and creativity. https://t.co/TDobsfvwwk |
| Defeatparkinsons @DrmariaDe @LNGTERMSURVIVOR @patientchat @TiffanyKairos Me too /we will be lost together 🤣😉 |
| @ @patientchat T1: Being a patient leader for me means finding innovative ways to help patients and empower them. Caring and helping the forgotten. #patientchat | |
| Amanda G @LAlupusLady Yea… love these two. #PatientChat fun. |
| Social Health Network @socialhealthnet [REDACTED USER] @patientchat #patientchat https://t.co/5PpArf98TE |
| Patient Chat @patientchat @lilithacacia I love that!😂 #patientchat |
| endoQueer @endoQueer For me, it means to keep stepping up for myself because when you step up for yourself, you step up for other people. #patientchat |
| endoQueer @endoQueer Also, we need to hold medical professionals accountable and when we do so that also helps others. #patientchat |
| Liz Hiles @mirletaliz RT @patientchat: I will introduce new Topics with T1, T2... Please include corresponding T# at the front of your answers - hard to remember… |
| Amanda G @LAlupusLady This smile made my FRIDAY, I mean #PatientChat |
| Social Health Network @socialhealthnet A1 We believe patient leaders are e-patients, advocates, influencers, and collaborators who are leading the charge in health. #patientchat |
| @ @patientchat Always been part of my big mission! #patientchat | |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat A1: There are many aspects of leadership. Everyone leads in their own way. To me, listening & showing up for people in the community in meaningful ways is important. Sharing your story, advocating for yourself/others, & moving advocacy forward is also very helpful! #PatientChat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @justagoodlife @LAlupusLady @wegohealth @patientchat AH! LOve it!! This was me as a baby...#patientchat https://t.co/3CsVS78x8l |
| Alan Brewington @abrewi3010 T1 it means we are not happy with our current quality of life and want/desire to change that sooner than later. The “leadership” part comes from a willingness to accept the risk of vulnerability in sharing our story. #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @patientchat T1. Being a Patient Leader means sharing your journey with a mission of educating others and raising awareness! 💜 #patientchat |
| Janice Cowden @JaniceTNBCmets T1 - I don’t think there’s a single definition for “patient leader,” it’s multifaceted, from someone who has mentored/helped just one person, to one who’s involved in mentoring, peer & community support, education, research/info sharing, networking/collaborating. #patientchat |
| Patient Chat @patientchat #patientchat |
| Social Health Network @socialhealthnet T1 Take lupus patient leader @GoldenMoe who's passionate about raising disease awareness and shedding light on health disparities. Monique brings a collaborative voice while disrupting racial inequity in the health ecosystem. #patientchat |
| @ @patientchat #patientchat I feel this. | |
| Amanda G @LAlupusLady T1 @patientchat being a passionate person who understands, supports and “empowers” their health community and beyond. #PatientChat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @patientchat #SURVIVINGSTILL #patientchat |
| Patient Chat @patientchat Topic 2 coming soon.... #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos [REDACTED USER] @Cpnervecenter Hi [REDACTED USER]!! So happy you're here! #patientchat |
| Liz Hiles @mirletaliz A1: It means to share your story & work toward change for all patients. That may look different from person to person. But the overall goal should be positive changes for patients. #PatientChat |
| Amanda G @LAlupusLady RT @TiffanyKairos: @patientchat T1. Being a Patient Leader means sharing your journey with a mission of educating others and raising awaren… |
| Barby Ingle Official @BarbyIngle T1: #patientchat 4 me PT leaders r responsible & accountable 4 our actions because we recognize they affect other humans & the care they get. We also r PTs, so we must be mindful of r own wellbeing. |
| Barby Ingle Official @BarbyIngle T1 Cont. There is room for millions of PT leaders because there is so much that needs to be updated in health. #PatientChat #HealthStar #RareStar https://t.co/TXHeNxtJX9 |
| Amanda G @LAlupusLady RT @abrewi3010: T1 it means we are not happy with our current quality of life and want/desire to change that sooner than later. The “leader… |
| Adam Johnson - DadVocate @RareDiseaseDad [REDACTED USER] @patientchat Love this, Lorrie! Sometimes we can get enamored with quantity/numbers. Here on social media, it's not about likes, retweets, etc. Those things aren't bad, but I'd venture to say that most of us have had a positive impact on others, whether we know it or not. #PatientChat |
| Amanda G @LAlupusLady RT @wegohealth: A1 We believe patient leaders are e-patients, advocates, influencers, and collaborators who are leading the charge in healt… |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos [REDACTED USER] @patientchat Yes!! #patientchat https://t.co/BNaO9SAOqg |
| Liz Hiles @mirletaliz #PatientChat |
| Patient Chat @patientchat T2: Where do you suggest someone should start when it comes to getting more involved in the community? #patientchat https://t.co/TzaTxTHJEp |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos This. 👇🏼 |
| Global Parents for Eczema Research @eczemaresearch T1 Being a patient leader means listening to your community and empowering others to advocate for our shared needs. It's about facilitating a movement. 💪#patientchat @wegohealth |
| Liz Hiles @mirletaliz #PatientChat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR #patientchat I think I need some classes on patientchattism |
| Liz Hiles @mirletaliz #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| Social Health Network @socialhealthnet T1 There are so many avenues of patient advocacy - whether posting on social media, collaborating with healthcare or working in research. At the end of the day, these individuals are leading patient communities, which is why we call them patient leaders! #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Alan Brewington @abrewi3010 T1 as @RemRunner says, it is hopefully ensuring that absolutely no one, regardless of illness, never feels alone. It’s how might we…? #patientchat |
 | Read the Fine Print @AnitaRezz @patientchat A2: I love my local @NAMICommunicate chapter. They're a wealth of information. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @eczemaresearch @wegohealth Absolutely! Listening is so important, & absolutely necessary, especially with impactful & successful leadership. Thanks for sharing this! #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| John Novack @J2Novack RT @patientchat: T2: Where do you suggest someone should start when it comes to getting more involved in the community? #patientchat https:… |
| Social Health Network @socialhealthnet Couldn't agree more! #patientchat https://t.co/Sm7ywjD4dK |
| Defeatparkinsons @DrmariaDe @wegohealth [REDACTED USER] We had 80-90% all week and no rain - yesterday no rain expected and had torrential storm - I think those of us with migraines can forecast better #patientchat #parkinsonsdiva 🤣🙃 |
| Amanda G @LAlupusLady T2 Start with @wegohealth it is an incredible platform and resource for new and experienced patient leaders to share and connect with health companies and the community. https://t.co/c5Ttrb0UwK #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| Patient Chat @patientchat #patientchat |
| @ @patientchat T2: I suggest starting with communities and platforms like @wegohealth that truly give you what you need to succeed. It also helps to know or be someone who has been through the process of getting a diagnosis and getting nowhere. #patientchat | |
| Alan Brewington @abrewi3010 [REDACTED USER] 🙏🙏🙏🙏 #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Amanda G @LAlupusLady RT @patientchat: #patientchat |
| Social Health Network @socialhealthnet [REDACTED USER] @Cpnervecenter Thanks for joining us Lisa! #patientchat |
| Social Health Network @socialhealthnet RT @TiffanyKairos: @patientchat T1. Being a Patient Leader means sharing your journey with a mission of educating others and raising awaren… |
| It'sME(Jaime) @exceedhergrasp1 T1: Being an effective advocate is about centering your community and its needs, pointing to the education we need to move towards effective, collective action. It's not about dictating a path for others to follow. "Leadership" is not my job. |
| Patient Chat @patientchat #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos T2. In groups, you are able to connect with many patients and caregivers. #patientchat |
| Patient Chat @patientchat #patientchat |
 | Heather Von St James @HeatherVSJ @patientchat T2: Look to those who are already involved and maybe someone you admire. There is room enough for everyone. Start by sharing your story, and what you've done to take control of your life after a diagnosis. Advocacy is not for everyone though.. it can be difficult. #patientchat |
| Amanda G @LAlupusLady T2 On Twitter start by following your condition or disease hashtag… met some great warriors by using #Lupus #PatientChat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos T2. Join in Twitter Chats such as this one right here. #patientchat |
| Defeatparkinsons @DrmariaDe @TiffanyKairos Me too https://t.co/93C74E8OZf |
 | Fibromyalgia National Health Organization @teamfibro RT @patientchat: T1: What does it mean to be a patient leader in the community? #patientchat https://t.co/sVRqgc1sHI |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat A2: Especially now, I’d say social media is a great start. That’s what I’ve done for the past 10 mo to acclimate, meet people, find communities, learn, & grow. Without it, I wouldn’t be in contact with all of the other wonderful advocates & patients that I am today! #PatientChat |
| Patient Chat @patientchat #patientchat |
| Amanda G @LAlupusLady RT @patientchat: #patientchat |
| Barby Ingle Official @BarbyIngle Absolutely, [REDACTED USER] #PatientChat #RareStar Officially a #RareStar |
| Liz Hiles @mirletaliz #PatientChat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @patientchat #patientchat It is an honor, but I always feel a HUGE responsibility, to know that when I speak, I speak for many others. IT should never be just about my opinion, but about all, I heard from my community. https://t.co/nSs4HXVm1Q |
| It'sME(Jaime) @exceedhergrasp1 Oop! #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @DrmariaDe Hooraaay!! #patientchat https://t.co/CTq1OUuInt |
| Liz Hiles @mirletaliz #PatientChat |
| Social Health Network @socialhealthnet RT @lilithacacia: @patientchat T2: I suggest starting with communities and platforms like @wegohealth that truly give you what you need to… |
| Liz Hiles @mirletaliz #PatientChat |
| Janice Cowden @JaniceTNBCmets A2: Aligning yourself w/ like-minded people & orgs w/ similar goals. For me, it was advocacy training through LBBC, which led to connections/friends, social media groups & other orgs. Also, it depends on your personal goals. Not everyone wants to be an advocate. #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Social Health Network @socialhealthnet RT @LAlupusLady: T2 Start with @wegohealth it is an incredible platform and resource for new and experienced patient leaders to share and c… |
| Alan Brewington @abrewi3010 T2 reach out to a vocal patient on platforms or chats like #patientchat, regardless of their disease. Silos almost never matter. Treat it like making a new friend. Asking how are you? is a killer ice breaker. |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR #patientchat #HIV #cancer #chronicpain #PTSD #anxiety WE SHOULD NEVER FORGET MENTAL HEALTH issues!!! |
| Amanda G @LAlupusLady T2 when ready reach out to @power4patients and ask to host a @patientchat 😉 I did in May during “Lupus Awareness Month” to empower those with #Lupus and more… #PatientChat |
| Patient Chat @patientchat Topic 3 coming soon.... #patientchat |
| Social Health Network @socialhealthnet T2 When it comes to get started in the online health community, getting connected is the first thing you want to do. Try searching hashtags in your condition area, like #MultipleSclerosis, #LupusWarrior, or #Spoonie. #patientchat |
| Fibromyalgia National Health Organization @teamfibro @patientchat A2: First think about issues you are passionate about and then see if there are relevant groups. Learn and listen as much as you can. #patientchat |
| Amanda G @LAlupusLady RT @mirletaliz: #PatientChat |
| endoQueer @endoQueer T2: First I would suggest if you feel alone and if you have internet access, go online first and you can connect with so many people like you going through the same thing or a similar situation. #patientchat |
| endoQueer @endoQueer T2: They can also connect you with other resources #patientchat |
| endoQueer @endoQueer T2: for me personally, if it weren't for finding the #endometriosis online community, I would feel alone and feel like I was the only one going through something. #patientchat |
| Barby Ingle Official @BarbyIngle T2. #PatientChat I would suggest turning your mess into a message. Share Your Story. Learn to share a short vs and long version, and remember to bring your patience and empathy along with you. 20+ years in and these are must have skills for a patient leader even this far in. |
| @ @patientchat Let's do this! 💪 #patientchat | |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR [REDACTED USER] @Cpnervecenter LOVE YOU!!! #patientchat |
| Fibromyalgia National Health Organization @teamfibro RT @BarbyIngle: T2. #PatientChat I would suggest turning your mess into a message. Share Your Story. Learn to share a short vs and long ver… |
| Social Health Network @socialhealthnet T2 It's important to not limit yourself to connecting with those in your own disease areas. We have so much to learn from each other, regardless of our diagnosis. The WEGO Health directory is a great tool to discover new patient leaders: https://t.co/mxRjVaq6y1 #patientchat |
| Patient Chat @patientchat T3: As a patient leader, what resources have you created or do you suggest to others? #patientchat https://t.co/1Hz9GXxAt2 |
 | Cynthia Covert, The Disabled Diva @TheDisabledDiva RT @wegohealth: A1 We believe patient leaders are e-patients, advocates, influencers, and collaborators who are leading the charge in healt… |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos Learn more about my journey with #epilepsy and get great tips for your chronic illness journey through my blog: https://t.co/R7SgWXMcHT #patientchat |
| John Novack @J2Novack RT @patientchat: T3: As a patient leader, what resources have you created or do you suggest to others? #patientchat https://t.co/1Hz9GXxAt2 |
| Liz Hiles @mirletaliz A2: Start by joining the mailing list on orgs, websites dedicated to your disease(s)/condition(s), and follow social media groups, pages, and hashtag lists. Then figure out how you want to share your experience(s). #PatientChat |
| Social Health Network @socialhealthnet @LAlupusLady Yes, we agree that finding your condition's hashtag or one that resonates with you is a great way to find others in the community. #patientchat |
 | 🌟 Sherry Reynolds ✨ Person-Centered Health @Cascadia T1 Taking your own personal life experience and using it to build community that can bring about actual changes in healthcare policy, perception and practice #patientchat |
| Amanda G @LAlupusLady RT @lilithacacia: @patientchat Let's do this! 💪 #patientchat |
| @ @wegohealth I completely agree. I focus on a lot of science to help patients. You should not need an MD and the ins and outs of insurance when you get a diagnosis. #patientchat | |
| Adam Johnson - DadVocate @RareDiseaseDad @wegohealth Fantastic advice! So helpful & important. I knew what they were, but being fairly new to social media, I didn't really know where to begin or what to look for. After I dialed into hashtags like #RareDisease, it was so helpful in finding communities, including #PatientChat! |
| Alan Brewington @abrewi3010 T2 as an #Medx epatient scholar I must put in a plug for them. Any patient centered conference like #Medx has fellow patients hungry to meet new patients and friends #patientchat |
| Liz Hiles @mirletaliz #sotrue, Seth! #PatientChat |
| It'sME(Jaime) @exceedhergrasp1 T2: Twitter is my favorite place to hang out! #NEISvoid is a hashtag for all CI folks. If you're looking for support for #pwME I recommend #MEAction's Living with ME Support Group. #MEAction also has a great framework for direct action/getting involved in advocacy. #patientchat |
| Barby Ingle Official @BarbyIngle Hey Hey Hey... love seeing you here, sunshine. #PatientChat #HealthStar |
| Liz Hiles @mirletaliz #PatientChat |
 | DenetraHampton @ProducerNurse @patientchat T1: To develop and sustain diverse & inclusive communities that reduce systemic and racial barriers thus empowering health equity. #patientchat @patientchat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @patientchat #patientchat I call myself the singing advocate, because besides a lot of work in policy making, information, groups, etc, etc....I also write in my songs about issues that I go through, or my community goes through. We have to listen to the people, and then, use what you like. |
| Liz Hiles @mirletaliz #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| endoQueer @endoQueer T3: I created this one, https://t.co/a26Ael5YSc to help LGBTQIA+ with endometriosis and beyond, because we often have to worry about food, shelter and work and often put our health on the back burner #patientchat |
| endoQueer @endoQueer T3: I believe we have to help people with their basic needs so they can get to and maintain their connections with healthcare and healthcare providers #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @patientchat As the founder of @TENofficial online community, we offer a variety of resources for those living with #epilepsy such as: Seizure First Aid Print Outs, "What Is Epilepsy?" Flyers, I.C.E Cards and more. #patientchat |
| Patient Chat @patientchat @HeatherVSJ Thanks for joining, Heather! Don't forget to use the hashtag #patientchat :) |
| Liz Hiles @mirletaliz #PatientChat |
| Liz Hiles @mirletaliz RT @lilithacacia: @patientchat T2: I suggest starting with communities and platforms like @wegohealth that truly give you what you need to… |
| @ @HeatherVSJ @wegohealth @patientchat Finding a mentor with a similar passion as you is an excellent idea #patientchat | |
| Adam Johnson - DadVocate @RareDiseaseDad @LNGTERMSURVIVOR Yes! Mental health is so important, yet can still be overlooked. Thank you for calling attention to this! #PatientChat |
| Fibromyalgia National Health Organization @teamfibro A3: We're a huge supporter of the bloggers & vloggers community for #Fibromyalgia. Updated resources and relatable experiences are extremely helpful. #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| DenetraHampton @ProducerNurse @patientchat T2: Community work fundamentally involves people. Leaders must be accessible to the leaders of grassroots organizations who serve the community. #patientchat @patientchat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @patientchat #patientchat Sometimes, we are lucky, and life invites us to be part of something important. Sharing this with all of you: Link to free streaming of the Emmy awarded documentary - the first and only from the SF chronicle- "LAST MEN STANDING", https://t.co/1HCQgyW1jB |
| Patient Chat @patientchat RT @ProducerNurse: @patientchat T2: Community work fundamentally involves people. Leaders must be accessible to the leaders of grassroots o… |
| Liz Hiles @mirletaliz #PatientChat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos T3. As the founder of @TENofficial online community, we offer a variety of resources for those living with #epilepsy such as: Seizure First Aid Print Outs, "What Is Epilepsy?" Flyers, I.C.E Cards and more. #patientchat |
| Patient Chat @patientchat #patientchat |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Hey hey! Popping up late, had a home health visit. Casey aka Mighty Casey aka the Mighty Mouth, writer/producer, #epatient, #healthtech digital rights activist, #healthpolicy good-troublemaker. Currently dealing w/StIV breast cancer recurrence - #MetsParty! #bcsm #patientchat |
| Alan Brewington @abrewi3010 T3 as a patient leader it’s fun & exciting to be invited to the cool kids table. There is a strong desire to speak. That said, my biggest improvement as a advocate & person came when I decided to improve my active listening skills. #patientchat |
| Amanda G @LAlupusLady T3 The typical awareness month activities weren’t going to work during May 2021, so thanks to a @healthevoices Impact Fund Grant I created and shared #LupusWithFlair shining a spotlight on the Lupus warriors and how each patient leader empowers the community. #PatientChat https://t.co/ZsWwHIkE4y |
| Janice Cowden @JaniceTNBCmets T3: Resources that match the needs the person asking, validated & vetted resources, including other patients who have more knowledge/experience in specific areas. I don’t refer to myself as a “patient leader” or “patient expert,” but a patient advocate or partner. #patientchat |
| Patient Chat @patientchat RT @wegohealth: T2 When it comes to get started in the online health community, getting connected is the first thing you want to do. Try se… |
| @ @patientchat T3: I have recently been working with @AlikeHealth and they have an amazing app that is perfect for patient empowerment. If you want a peek at the app it is on my youtube channel. Link is in my bio. #innovation #patientchat | |
 | Jenn Schropp @Endo_Jenn @patientchat T2: social media is a great tool. It's a way to connect with people going through what you're going through and spreading awareness. You just never know who is reading and watching your posts. #patientchat |
| The Sickle Cell Health Coach @scdhealthcoach T2: Some believe the best place to start leading is social media. I think the best place to start is while in the hospital. Patients educate health care providers and have the ability to change outcomes @patientchat #patientchat |
 | Corey @Prattzky19 @TiffanyKairos @TENofficial Where can these resources be found? |
| Patient Chat @patientchat Topic 4 coming soon... #patientchat |
| DenetraHampton @ProducerNurse @patientchat T3: I am a filmmaker creating a space of real-life story-telling that comes from the people we serve. They teach us, prepare us and develop us for any problem we may face. #patientchat @patientchat |
| Global Parents for Eczema Research @eczemaresearch T3 - We are a patient organization that works in the research space. So one thing I often say to other parents or patients is to have confidence in your expertise! Your lived experience makes you an expert and privy to knowledge that no one else has.🙂 #patientchat @wegohealth |
| Barby Ingle Official @BarbyIngle T3. #PatientChat I have created [REDACTED USER], https://t.co/34PG9DTB1S, https://t.co/wctul8gJtY #MusicMovesAwareness, Many PSAs, commercials, legislation, PT ED brochures, Published Books, & more - https://t.co/sxETR2ejHa. I suggest y do u, u b y... You have an important story. |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat A3: I don’t like to talk about what I do, but reflecting is nice. I’ve lead a male support call for my #RareDisease, started a website/blog, supported my daughter founding @bake4mito, & have other big (for me) things coming that I never thought I’d do. #PatientChat #ParentsAsRare |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos THIS. 👇🏼#patientchat |
| Amanda G @LAlupusLady T3 #LupusWithFlair #PatientChat https://t.co/xY1VYCVVPv |
| Patient Chat @patientchat RT @DimaHendricks: T2: Some believe the best place to start leading is social media. I think the best place to start is while in the hospit… |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T1: IMO, actual experience of a health condition, or caregiving for someone with a health condition, puts one in the 'can teach somebody stuff' (potiential leader) zone. Then it's a matter of following up via personal ethics rules re #misinformation + transparency #patientchat |
| Patient Chat @patientchat #patientchat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR #patientchat @patientchat AH! we have to be strong but vulnerable and open our souls about what we go through, and still motivational. It's like me saying, I had LOTS OF troubles sleeping lately...let's talk about insomnia. AH!!! real right now.... https://t.co/uPMfQdboRX |
| Alan Brewington @abrewi3010 T3 there is no more important voice than your own. Creating and expressing your message only works if you use your voice, not some ideal bc you want to be a patient leader. Quality over quantity always is best. #patientchat |
| Social Health Network @socialhealthnet T3 The WEGO Health platform is also home to everything you need to grow your advocacy tool kit. With free online courses, resources, and tips specifically designed to enhance your advocacy. #patientchat (1/2) |
| Patient Chat @patientchat T4: In what ways have you grown your advocacy skills so far? #patientchat https://t.co/mTQr5e4ab6 |
| Liz Hiles @mirletaliz A3: If I have my bladder cancer hat on my blog & SM profiles, @BladderCancerHU, [REDACTED USER], @BladderCancerUS, @UOAA & @MyGCOA for starters. There are other resources for other diagnoses & specific resources for the AYA Cancer community. #PatientChat |
| Social Health Network @socialhealthnet T3 We also have some free resources for patient leaders to take that next step in their advocacy efforts. One of them is called “5 Tips To Be Your Own Best Health Advocate https://t.co/89XUDNPbPJ #patientchat |
| John Novack @J2Novack RT @mirletaliz: A3: If I have my bladder cancer hat on my blog & SM profiles, @BladderCancerHU, [REDACTED USER], @BladderCancerUS, @UOAA &… |
| Social Health Network @socialhealthnet T3 Another great resource to check out is called “Becoming a Healthcare Collaborator” https://t.co/zsVa0YmLOM #patientchat |
| John Novack @J2Novack RT @patientchat: T4: In what ways have you grown your advocacy skills so far? #patientchat https://t.co/mTQr5e4ab6 |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @patientchat #patientchat @patientchat Am I doing this correctly? LOL, sorry, let me know. LOVE. |
| Patient Chat @patientchat #patientchat |
| Amanda G @LAlupusLady RT @wegohealth: T3 We also have some free resources for patient leaders to take that next step in their advocacy efforts. One of them is ca… |
| Amanda G @LAlupusLady RT @wegohealth: T3 Another great resource to check out is called “Becoming a Healthcare Collaborator” https://t.co/zsVa0YmLOM #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| Social Health Network @socialhealthnet RT @teamfibro: A3: We're a huge supporter of the bloggers & vloggers community for #Fibromyalgia. Updated resources and relatable experienc… |
| Adam Johnson - DadVocate @RareDiseaseDad @BarbyIngle [REDACTED USER] Love it! Thanks for all you've done & continue to do, Barby! You're the best! #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T2: Who are the current leaders doing work in the health condition's space whose work you're aligned with? Building into that network is 1st step, IMO. Relationships, group info-sharing, are important in any leadership journey. #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| Patient Chat @patientchat @twitchywoman18 Happy you could join us today, Sharon! Don't forget to use the hashtag #patientchat in your tweets :) |
| Liz Hiles @mirletaliz #PatientChat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @patientchat @patientchat #patientchat my skills growing....AH, question, important question. To know more and more, that not everyone is going to like you if you speak up about needs......and be OK with it. |
| Liz Hiles @mirletaliz #PatientChat |
| The Sickle Cell Health Coach @scdhealthcoach @patientchat It’s important to share our stories. They can be so impactful! #patientchat Here’s mine: https://t.co/DWJziYQC8g |
| @ @patientchat T4: I am just constantly learning how things work and what patients really need. I connect with companies, other patients, and patient leaders. I am always on the lookout for true innovations in healthcare. #patientchat | |
| Amanda G @LAlupusLady @wegohealth Incredibly honored to be the first winner of the @wegohealth award for “Healthcare Collaborator: Patient” #PatientChat #WEGOHealthAwards https://t.co/gA8mSR0V8a |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @patientchat T4. I've come to expand my advocacy by exploring and embracing video-work. Taking part in more Facebook/IG LIVE conversations, IG TV etc. #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Patient Chat @patientchat RT @wegohealth: T3 We also have some free resources for patient leaders to take that next step in their advocacy efforts. One of them is ca… |
| Amanda G @LAlupusLady RT @MightyCasey: T2: Who are the current leaders doing work in the health condition's space whose work you're aligned with? Building into t… |
| Social Health Network @socialhealthnet RT @mirletaliz: A3: If I have my bladder cancer hat on my blog & SM profiles, @BladderCancerHU, [REDACTED USER], @BladderCancerUS, @UOAA &… |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T3: Did a checklist for general use: https://t.co/tjZ4ITkox3 My full CV is here: https://t.co/t5E3Tk6wMn I been busy 🤣🤣 #patientchat |
| DenetraHampton @ProducerNurse @patientchat Leadership is alot to do about connecting your resources to create impactful collaborations. Big does not always equal ROI. I have found that I can move real quickly with an initiative when working with folks on the ground floor. #patientchat |
| Liz Hiles @mirletaliz #PatientChat https://t.co/5JlYr9gWnY |
| Infirmity Overcomer @InfirmityO It means that I have the ability the capacity the power to make a difference... Empower the patients #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Patient Chat @patientchat @twitchywoman18 @TWITCHYWOMAN No worries! We are here to help! #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos THIS.💜 #patientchat https://t.co/iNSNKZiVTR |
| Liz Hiles @mirletaliz #PatientChat |
| Barby Ingle Official @BarbyIngle T4. #PatientChat I grow daily. I have learned to work with so many people with so many different conditions from my own, backgrounds, life experiences. I love the feeling of humanity and community and improving my comedy, empathy, patience, and love for humans around the world. |
| Alan Brewington @abrewi3010 I like searching #hashtags but it’s easy to fall into a silo and miss tags like #wegohealthchat and of course the great. Don’t be afraid to hashtags shop is what I’m suggesting. #patientchat |
| Amanda G @LAlupusLady Stories and storytelling matters. #PatientChat |
| @ RT @DimaHendricks: @patientchat It’s important to share our stories. They can be so impactful! #patientchat Here’s mine: https://t.co/DWJ… | |
| Amanda G @LAlupusLady RT @lilithacacia: @patientchat T4: I am just constantly learning how things work and what patients really need. I connect with companies, o… |
| Liz Hiles @mirletaliz #PatientChat |
| Social Health Network @socialhealthnet T4 You can certainly check out some of our free courses to take your advocacy skills to the next level. We have courses on keynote talks, how to leverage your story, being paid as a patient leader, and even one on TikTok! #patientchat |
| Read the Fine Print @AnitaRezz @patientchat @TheSarahFader just co-wrote a CBT Workbook, she's written several other books and she's the co-founder of [REDACTED USER]. Then there's @BipolarMomLife & @ThisIsMyBrave. These are more wonderful resources! #patientchat |
| @ RT @wegohealth: T4 You can certainly check out some of our free courses to take your advocacy skills to the next level. We have courses on… | |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @patientchat @patientchat #patientchat My skills have to be on balance, with also thinking about my health and needs, and that is a skill on its own. We need to talk more to each other, to understand we're not alone. |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @LAlupusLady @power4patients @patientchat I would love to host a @patientchat sometime for #EpilepsyAwareness if they would have me to help educate and further awareness! 💜 #patientchat |
| Jenn Schropp @Endo_Jenn @patientchat T4: I'm working on improving my writing. I've already been published in a magazine but I'm not so proud of that article so I'm going to learn from it and build. #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T4: Given my career history (actor, journalist, media producer, stand-up comedian, comedy writer) I'm using *all* of that in my current work. Firing on all cylinders, basically 😎 #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Infirmity Overcomer @InfirmityO A patient leader can match their gifts and abilities with the needs of the community, there's a will there's a way #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat A4: So much growth for me. I went from a silent observer to an anonymous contributor to owning my story via a blog & website launch (https://t.co/qlIBCWvcE0). I’ve started meeting with legislators & am working to build communities that I sought but couldn’t find yet. #PatientChat |
| endoQueer @endoQueer T4: I have learned how to talk to all types of people from diverse populations.#patientchat |
| endoQueer @endoQueer I'm also getting more comfortable with my own personal vulnerability. I did lives on Instagram (where I'm also @endoQueer) when I was in the hospital last month and reached out to friends and family more to let them know my status and how they could help. #patientchat |
| The Sickle Cell Health Coach @scdhealthcoach Absolutely! #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Amanda G @LAlupusLady The main thing I share with Patient Leaders is to find your why… (The photobomb was unintentional.) #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| Liz Hiles @mirletaliz RT @DimaHendricks: T2: Some believe the best place to start leading is social media. I think the best place to start is while in the hospit… |
| Liz Hiles @mirletaliz #PatientChat |
| Adam Johnson - DadVocate @RareDiseaseDad [REDACTED USER] @patientchat @Bake4Mito Hey Lisa! Nice to cross paths again here! #PatientChat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @LAlupusLady: The main thing I share with Patient Leaders is to find your why… (The photobomb was unintentional.) #PatientChat https://t… |
| Patient Chat @patientchat Topic 5 coming soon..... #patientchat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @DavinaConner Thank you DEE! #patientchat @patientchat |
| Global Parents for Eczema Research @eczemaresearch T4 - One thing we've learned: Don't be afraid to ruffle feathers. Nothing changes when everyone is comfortable! #patientchat @wegohealth |
| Amanda G @LAlupusLady RT @wegohealth: T4 You can certainly check out some of our free courses to take your advocacy skills to the next level. We have courses on… |
| Liz Hiles @mirletaliz #PatientChat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @Endo_Jenn @patientchat Congratulations on having your article posted in a magazine! Still, that's big! #patientchat |
| Heather Von St James @HeatherVSJ @patientchat I started by blogging and sharing my story on various blogs and other publications, both online and hard copies. I've also been to Capitol Hill many times to advocate for funding for #mesothelioma. I started with writing, and now cochair an advisory board and more. #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
 | Twitchy Woman @twitchywoman18 @patientchat @TWITCHYWOMAN And did it wrong again #patientchat |
| Alan Brewington @abrewi3010 T4 I’ve worked hard at improving my #DesignThinking skills. I’m now annoying my coworkers every chance I get. Even got my boss to let me run a meeting under design thinking, this is huge considering I’m a state Medicaid employee #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @LAlupusLady Find your why...yes! Thanks for all you do, Amanda! #PatientChat |
| @ I am truly loving all of us coming together to help patients and make a true difference together! @wegohealth @patientchat #patientchat | |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @abrewi3010 #patientchat https://t.co/Ha3FF1rqds |
| Liz Hiles @mirletaliz I've been honing my skills since childhood as far as advocacy. My patient advocacy started about 5 years ago with my bladder cancer diagnosis and things have shifted & grown from there. I now write, moderate & advocate full time. #PatientChat |
 | Lori Choi 💙 @lchoi5803 RT @wegohealth: T4 You can certainly check out some of our free courses to take your advocacy skills to the next level. We have courses on… |
| Patient Chat @patientchat T5: In what ways do you hope to get more involved in your community for the rest of 2021? #patientchat https://t.co/X3QwMkBM7x |
| Liz Hiles @mirletaliz #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| Jenn Schropp @Endo_Jenn @TiffanyKairos @patientchat Thank you so much. It's a big deal but after seeing it in print I was disappointed in myself and their editing team. 😊 |
| Alan Brewington @abrewi3010 T4 I’m more willing to use the skill set of my individual patient story to change the world vs letting my ego do it. #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @lilithacacia @wegohealth @patientchat I couldn't agree more @lilithacacia! #patientchat |
| Liz Hiles @mirletaliz @LNGTERMSURVIVOR @patientchat Looks good to me! #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| Social Health Network @socialhealthnet @Endo_Jenn @patientchat We have a resource on our site that might help with this. You'll have to create an account (if you don't already have one), but can check it out with other free resources! https://t.co/dtrrBAmVtA #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Janice Cowden @JaniceTNBCmets T4: ⬆️ knowledge thanks to networking w/ other advocates. I had no idea who I wanted to be as an advocate after #MBC dx(2016) & 1st advocacy trng(2017). ⬆️training, networking, social media, conferences, & orgs, have refined policy, peer support, & research advocacy. #Patientchat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @patientchat @patientchat #patientchat Guys, I might slow down a little bit, I'm feeling dizzy, due to a lack of sleep in the last few days. CAREGIVING is part of my life as well, my mom lives with me. https://t.co/ttxtxhssZg |
| Amanda G @LAlupusLady T4 The skills I have learned from advocacy days on Capitol Hill to speaking and sharing at @HIMSS help me share my journey and story with others. Now writing for @channelkindness does not give me the anxiety it used to… #PatientChat |
| Twitchy Woman @twitchywoman18 How do you get people to vote for you? I have gotten a lot of likes on FB,Twitter and Instagram, but they do not translate into endorsements. #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Patient Chat @patientchat @LNGTERMSURVIVOR Haha, you're doing an awesome job! #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Patient Chat @patientchat #patientchat |
| @ @patientchat T5: I hope to achieve more growth and influence in the medical and insurance fields and consistently finding patients who need help but don't know where to turn. Again, more innovation in healthcare #patientchat | |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @patientchat T5. My hope and actually, goal is to do more interviews and videos to spark conversation and raise awareness of #epilepsy on multiple social media platforms! #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @wegohealth Yes, I need to dig into @wegohealth a bit more. I've seen it come across my feed at times, but haven't done much on that platform yet. Especially coming into the #RareDisease space initially, there's so much out there. Thanks for pointing out some of these resources! #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| endoQueer @endoQueer T5: I'll be continuing to do outreach through my summits (my next virtual one is in October) and continuing to bridge the gaps that I've identified in connecting my communities to care #patientchat |
| Social Health Network @socialhealthnet T5 Our word for this year is "connection." Our community feedback is inspiring us to connect patient leaders more than ever before. We've been trying out virtual networking events to connect the community & can't wait for more. #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| @ [REDACTED USER] @patientchat Seeing all this passion to truly help is warming my heart #patientchat | |
| Barby Ingle Official @BarbyIngle T5. #PatientChat The #iPain #HeroofHope awards has some great winners & I look forward 2 diving n deeper on the projects they are all creating & participating in. I am also participating in 6 conferences (plus the #iPainSummit, where I hope to see all of you in #NERVEMBER!) #2021 |
| Liz Hiles @mirletaliz #PatientChat |
| Social Health Network @socialhealthnet @RareDiseaseDad Don't hesitate to reach out if you have any questions or if we can help in any way! #patientchat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @patientchat @patientchat #patientchat I am lucky that my voice is flying a little bit higher, so, I might have enough resources to help others, but I want to keep asking what the communities I serve a need. We have to keep evolving with the times. We have problems as an independent advocate |
| Jenn Schropp @Endo_Jenn @patientchat T5: I hope to spend more time checking in on my #endo sisters. I already do personally reach out to some of my #endometriosis followers but I wanna do that a little more. I also want to get more involved in awareness events. #patientchat |
| Amanda G @LAlupusLady T5 I am preparing to engage and share #BeKind21 a campaign of the @BTWFoundation and @channelkindness plus I will be advocating for all with my advocacy efforts this Fall and Winter. Ideally I can join the @wegohealth PLAB too! #PatientChat |
| Amanda G @LAlupusLady RT @TiffanyKairos: THIS. 👇🏼#patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T5: TBH most (all?) of my work this year will involve my own #mets journey. My podcast @hilarious_is will go back to a regular production schedule Q4 2021, but I'm still getting my legs under me re my current health status. 😱🙄🤣 #patientchat |
| Alan Brewington @abrewi3010 T5 to be a @nickdawson devil’s advocate, I don’t think “more involved, is the right question. How might we raise the quality of involvement would be better? Quality gives a leader a chance to step away for a break where increase involvement doesn’t. #patientchat |
| Patient Chat @patientchat #patientchat |
| Heather Von St James @HeatherVSJ @patientchat T5: I would like to be more involved in the entire cancer community as a whole, helping shape survivorship and mental health issues that pertain to cancer, especially long-term survivorship issues. Partnering with pharma companies has long been a desire. #patientchat |
| @ Even though there are so many of us working hard we don't always see it to a degree like this #patientchat | |
| Liz Hiles @mirletaliz A5: I'm expanding the platforms that I'm writing for and getting my story out in more places. I've also been getting some requests to be a part of various panels. In 2022, I'm planning on attending the @UOAA national conference and hope to present there as well. #PatientChat |
| Patsy Hinson @patsyhinson T5 I plan to continue to interface with advocates outside “my diagnosis” areas. Working together has been so good for me. #patientchat |
| John Novack @J2Novack RT @patientchat: T5: In what ways do you hope to get more involved in your community for the rest of 2021? #patientchat https://t.co/X3QwMk… |
| The Sickle Cell Health Coach @scdhealthcoach You GO girl! https://t.co/MKt2qbg4Nm |
| Liz Hiles @mirletaliz #PatientChat |
 | Kara @RolltideKara @patientchat I would love to get a Prostate Cancer walk here! I want to get more involved with events so I can get more information about Prostate Cancer out there. There is a lot of miseducation about it and it’s scary. #patientchat |
| Social Health Network @socialhealthnet [REDACTED USER] #patientchat https://t.co/jYhKyw9yOG |
| Adam Johnson - DadVocate @RareDiseaseDad A5: Coming soon: a project that I hope will be useful for others. A community where parents like me, who are the ones that have a #RareDisease & are trying to navigate the ins-and-outs of parenting & life while dealing with this massive shift, connect. #PatientChat #ParentsAsRare |
| Infirmity Overcomer @InfirmityO I highlight a spectrum of topics. Because getting better is more than doctor's appointments. Think outside the box #patientchat |
| Kara @RolltideKara @patientchat Find organizations that specialize in what you are passionate about. Find walks community events so you can talk to people and find out how to be more involved. One voice can make a huge difference #patientchat |
| Read the Fine Print @AnitaRezz @patientchat A5: I want to be online more and talk more about bipolar disorder and mental health in general. #patientchat |
| Patient Chat @patientchat Topic 6 coming soon... #patientchat |
| It'sME(Jaime) @exceedhergrasp1 T3: Whew, this is gonna be a multi-part 🧵(1/8) #patientchat |
| It'sME(Jaime) @exceedhergrasp1 T3: The Pacing Guide -- useful for clinicians & patients, it describes the most effective activity management strategy for people with ME, #MECFS, & #LongCOVID. I've heard ppl use it to manage other things too, like mental health. #patientchat (2/8) https://t.co/HFo0amNfvg |
| It'sME(Jaime) @exceedhergrasp1 T3: The Hospitalization Kit, including one handout for what to pack for an overnight hospital stay, and a sheet you can populate with your basic medical info to hand to your doctor. That's here: https://t.co/en3ZOReNG7 And here: https://t.co/jSph5EI5Tt #patientchat (3/8) |
| It'sME(Jaime) @exceedhergrasp1 T3: The #MEAction research summary was a collaborative effort with researchers & clinicians who study ME to present a readable summary of what we know about ME so far. That can be found here: https://t.co/8Z3WwAJvBA #patientchat (4/8) |
| It'sME(Jaime) @exceedhergrasp1 T3: @WildNycgirl and I put together a seminar for patients about the potential connection between #LongCOVID and #MECFS featuring #pwME chatting about their chronic illness experience & an expert clinician. Lots of resources here, too: https://t.co/25OIFvqlpd #patientchat (5/8) |
| It'sME(Jaime) @exceedhergrasp1 T3: Created a clinical seminar featuring a two medical doctors & a PhD: an ME expert, an ME pediatrics expert, & an expert in exercise science. In partnership w/U of Rochester School of Medicine & Dentistry w/Neuro dep't for CME credit. (6/8) #patientchat https://t.co/cDKVIPbxwz |
| It'sME(Jaime) @exceedhergrasp1 T3: Diagnosis & Treatment two-pager to share with clinicians: https://t.co/PYId6S3kmU #patientchat (7/8) |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T5: I will show up, wearing my patient activist cape, in places like @THCBstaff's #THCBGang, which I did yesterday (look at top of left rail for vid link): https://t.co/rqykkrWOd8 #patientchat |
| Amanda G @LAlupusLady Grateful to @KathleenArntsen @LADAOrg for giving me opportunities to share. https://t.co/GOQ0Ck0WeR is an organization that truly empowers #lupus patients on their advocacy and leadership journey #PatientChat |
 | Janice Tufte @Hassanah2017 @wegohealth T 5 Stay in touch with some of the #ConveningTheCenter #connections @danamlewis @adamhayden @mike_mitt @dynamicinaction #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @patientchat T5. I will be looking into pursuing connecting with Chronic Illness Orgs. to host IG/Twitter Chats to plant seeds of hope, empowerment and education. #patientchat |
| Amanda G @LAlupusLady @DimaHendricks #PatientChat 🌟💖🌟❣️ |
| Alan Brewington @abrewi3010 T5 if we can learn anything from @GilmerHealthLaw passing it’s we need to concentrate more on the mental/physical health of patient leaders. It’s to easy to assume a leader is doing ok. #patientchat |
| Liz Hiles @mirletaliz #PatientChat I give them the link to the Awards tab on my profile and ask them specifically. Also, going through the WEGO Health Awards activities helps. You have to remind people frequently and post daily to every few days. I also emailed specific people &texted people the link. |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR #patientchat @patientchat Talking to my heart right now, & I feel, that I have to listen more to my body, when others reach out to me, it has to be always also considering me. Is it funny, that I see myself talking to Ophrah? we are the 1st generations growing older with HIV https://t.co/HnlNf9SAWP |
| Patient Chat @patientchat T6: In what ways have you been recognized for the work you've done as a patient leader? #patientchat https://t.co/hMbgWbjGaW |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @Hassanah2017: @wegohealth T 5 Stay in touch with some of the #ConveningTheCenter #connections @danamlewis @adamhayden @mike_mitt @dynam… |
| Infirmity Overcomer @InfirmityO I've grown my advocacy skills by being honest. How could I be of assistance if I'm in denial... Nowhere to go but up #patientchat |
| The Sickle Cell Health Coach @scdhealthcoach T5: In 2021, I am releasing my book. I hope my story will inspire chronic illness Warriors to share their story and step into their true calling. #patientchat @patientchat |
| Janice Cowden @JaniceTNBCmets T5: Working w/ officials & other advoc, & the #LightUpMBC nat’l campaign, to get #MBCAwareness Day proclaimed in my city/county & the state of FL. BC awareness has the entire month of October, we have one day - 10/13. And, returning to IN-PERSON conferences!😃 #PatientChat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos I've begun to speak at local colleges, telling my story of life with #epilepsy and raising awareness. I hope to gain more opportunities to speak to the public. #patientchat |
| Social Health Network @socialhealthnet [REDACTED USER] @TiffanyKairos @patientchat Tell us more about these IG chats?! 👀😲 #patientchat |
| Liz Hiles @mirletaliz Amazing news! Congratulations! I'm working on writing a book on bladder cancer...there are none from a woman's perspective. Only older white men! #pastdue! #PatientChat |
| Adam Johnson - DadVocate @RareDiseaseDad [REDACTED USER] @patientchat @Bake4Mito Thank you, Maggie! My daughter doesn’t have mito…thankfully that’s just my territory. But she does have the biggest heart & is raising awareness for the disease & money for those individuals & families impacted by #Mito. #ProudDad #GirlDad #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| John Novack @J2Novack RT @abrewi3010: T5 if we can learn anything from @GilmerHealthLaw passing it’s we need to concentrate more on the mental/physical health of… |
| Liz Hiles @mirletaliz #PatientChat |
| endoQueer @endoQueer T6: Well first, my #WEGOHealthAwards Rookie of the Year Nomination! #patientchat https://t.co/Fa2Y9C4DUC |
| Social Health Network @socialhealthnet @TiffanyKairos Way to go Tiffany! #patientchat |
| @ [REDACTED USER] @patientchat I am completely freelance as well. It is so freeing to be able to take on projects you are passionate about and truly be your own boss. #patientchat | |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @patientchat @patientchat #patientchat It's undeniable, that been better known, when you're not part of an agency or organization, really helps in your advocacy and activism. AH! Hacerlo mas en espanol.....to do it more in Spanish. |
| DenetraHampton @ProducerNurse @patientchat Health equity is my advocacy and I hope to be able to use my platform to collaborate with health organizations. #patientchat |
| Social Health Network @socialhealthnet T6 One way we recognize the amazing work patient leaders are doing is through the WEGO Health Awards — a program created to honor change makers, advocates, and leaders in the health space. Head to https://t.co/Wy46FgqkUq to nominate a fellow patient leader today! #patientchat |
| The Sickle Cell Health Coach @scdhealthcoach @SickCells always has great resources for the sickle cell community. #Patientchat @wegohealth |
| Infirmity Overcomer @InfirmityO I'm hoping to become more involved by holding forums & having giveaways, making shirts & hoodies. #skiesthelimit #patientchat |
| Liz Hiles @mirletaliz All about these as well! #PatientChat |
| Social Health Network @socialhealthnet T6 We recognize patient leaders in 16 different categories! Everything from Best in show TikTok and Instagram to healthcare collaborator and patient leader hero. It is the only program to recognize patient leaders across all condition areas and platforms. #patientchat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @patientchat T6. In 2016, I won the #WEGOHealthAwards "Best In Show: Twitter" and have been featured in chronic illness magazines for my works as an advocate & blogger. #patientchat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR #patientchat @patientchat #espanol IMPORTANTE HACERLO EN OTROS IDIOMAS! Very important to reach out in other languages. |
| Patient Chat @patientchat @endoQueer Woooo! 🎉 Congratulations #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Alan Brewington @abrewi3010 T6 one of the biggest honors I have received is when a personal hero asked to talk to me for their blog. Awards are nice but when hero’s want to be your friend that’s priceless #patientchat |
 | rebecca trahan @takeheartlive hi i am rebecca, a survivor living with two rare diseases. i am going on a road trip to celebrate my bonus 10 year anniversary this august. i hope to meet fellow rare disease survivors and bring awareness to what it's like living rare. back to the scene of the 1st #scad colorado. |
| Social Health Network @socialhealthnet RT @abrewi3010: T5 if we can learn anything from @GilmerHealthLaw passing it’s we need to concentrate more on the mental/physical health of… |
| Patient Chat @patientchat [REDACTED USER] Nice! Congratulations 🎉🎉 #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Infirmity Overcomer @InfirmityO I've been nominated this year and one of my activity responses was used on WegoHealth's Instagram. Coolest thing ever #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| rebecca trahan @takeheartlive that's amazing. |
 | Christina Lizaso @btrfly12 RT @wegohealth: T6 One way we recognize the amazing work patient leaders are doing is through the WEGO Health Awards — a program created to… |
| Amanda G @LAlupusLady T6 Honored that @LupusResearch considers me a #Lupus Luminary. I have received a @wegohealth award for my collaboration with patients and companies in the healthcare space. Writing for @channelkindness and reading my words on https://t.co/L7hz30k9Kh never gets old. #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| Heather Von St James @HeatherVSJ @patientchat T6 I've gotten awards from @curemeso for my work, been nominated 3 years in a row for @wegohealth awards, and was a finalist once! Also been recognized by the @PointsofLight foundation for my advocacy. It's always so great to be recognized for our hard work. #patientchat |
| The Sickle Cell Health Coach @scdhealthcoach This is going by so fast!!! #patientchat @patientchat https://t.co/G8B8Lqg4zL |
| endoQueer @endoQueer And when I joined with other endo advocates at National Harbor in Maryland to light the Capital Wheel yellow for Endometriosis Awareness Month #patientchat https://t.co/JO3yPNeGkC |
 | M&B Sciences @mbsciencesinc @TiffanyKairos Love this! |
| Amanda G @LAlupusLady RT @wegohealth: T5 Our word for this year is "connection." Our community feedback is inspiring us to connect patient leaders more than ever… |
| Patient Chat @patientchat @DimaHendricks Congratulations 🎉🎉 Looking forward to it!! #patientchat |
| Social Health Network @socialhealthnet @ProducerNurse @patientchat That is great to hear! You might find one of our recent webinars interesting since it is about health equity. #patientchat https://t.co/sF48azU7L7 |
| Patient Chat @patientchat RT @wegohealth: T6 One way we recognize the amazing work patient leaders are doing is through the WEGO Health Awards — a program created to… |
| Barby Ingle Official @BarbyIngle T6: #PatientChat During the past 20 years of living w pain I am so happy to be seen as a leader and taken seriously as an advocate, author and motivational speaker. |
| Barby Ingle Official @BarbyIngle T6 Cont. #PatientChat Even being nominated for many awards has been an unbelievable experience and then actually winning ones like the Neuropathy Action’s You Are Our Hero Award and the Invisible Disability Association’s Impact award & @WEGOHealth awards x3 was truly breathtaking https://t.co/kl3XSbop45 |
| Barby Ingle Official @BarbyIngle T6 Cont. #PatientChat When I reflect on my honors, I remember a favorite quote directly related to a cause that chose me, “The ultimate measure of a person is not where they stand n moments of comfort & convenience, but rather where they stand during times of challenge & crisis” https://t.co/Vk52WFT9ea |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @patientchat #patientchat For me, and I mean it, the best recognition is when someone says thank you, or when someone says this group is helping me a lot. THE BEST!!!! But, I feel the world is kind to me....I'll be in the cover of the magazine I adore the most POZ, next month. & https://t.co/i0TvGoktlJ |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos T6. Such a blessing & honor to be featured in “Patients Have Power” magazine, created by @clarahealth!🙂 #patientchat https://t.co/EaiyrgElzI |
| Alan Brewington @abrewi3010 T6 #medx picked me to be in their epatient honor roll after my first year there. That was awesome, mainly bc I was so clueless I thought I during the actual conference. Also I struggled hard in school so that was my first honor roll. #patientchat |
| @ @patientchat T6: I was nominated for 2 #WEGOHealthAwards this year. I do advocay work with the government, and GSK. I have amazing companies that come to me for advice. Recognition is nice, but was never why I started. #patientchat | |
| Social Health Network @socialhealthnet @endoQueer #patientchat https://t.co/Q7eY627o5i |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T6: Mostly the recognition aimed my way has been in the form of invitations to participate in policy/tech/research working groups, which is totally my jam. #clinicalresearch #HealthTech #healthpolicy #BeLikeLight #Cochrane #patientsincluded #patientchat |
| It'sME(Jaime) @exceedhergrasp1 T4: A surprisingly large percentage of being a good advocate is being as open-minded as possible, while remaining intolerant of intolerance. Expanding your boundaries for people of good faith & contracting them for bad faith actors is a vital skill. (1/2) #patientchat |
| It'sME(Jaime) @exceedhergrasp1 This question is only answerable in the broadest sense because being a good advocate means you have increased your skill set in every direction: writing, editing, design, science, diplomacy, task management. #patientchat (2/2) |
 | ME Action Now @MEActNOW RT @exceedhergrasp1: T3: Whew, this is gonna be a multi-part 🧵(1/8) #patientchat |
| Social Health Network @socialhealthnet T6 Some of the patient leader nominees include @lbdeck, [REDACTED USER], @stacy_hurt, @dion_langley, and @laraBloom. Check out who else has been nominated by going to the nominee directory: https://t.co/5wbTgi6GF6 #patientchat |
| Liz Hiles @mirletaliz A6: I've gotten #WEGOHealthAwards Nominations in 4 categories so far. I have been offered regular contributor positions with different sites. Asked to be a part of Patient groups and panels. Cheesy cliche but true...honor to be nominated or asked. #PatientChat |
| Christina Lizaso @btrfly12 RT @TiffanyKairos: T6. Such a blessing & honor to be featured in “Patients Have Power” magazine, created by @clarahealth!🙂 #patientchat htt… |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @exceedhergrasp1: T4: A surprisingly large percentage of being a good advocate is being as open-minded as possible, while remaining into… |
| Christina Lizaso @btrfly12 RT @wegohealth: @ProducerNurse @patientchat That is great to hear! You might find one of our recent webinars interesting since it is about… |
| Liz Hiles @mirletaliz #PatientChat YES, MORE! |
| @ [REDACTED USER] @patientchat I have had the same experience. It is so freeing to make your own hours and take on only what you know you can handle is truly a privilege I am glad I figured out. #patientchat | |
| Amanda G @LAlupusLady To all patients know that we need you here. Explore @FYAbox and @BTWFoundation ‘s https://t.co/8iaeD920mB and sign the #PleaseStay pledge. You are incredibly loved. #PatientChat |
| Patient Chat @patientchat @DimaHendricks It really is! Time flies when you're having fun! #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Social Health Network @socialhealthnet RT @DimaHendricks: This is going by so fast!!! #patientchat @patientchat https://t.co/G8B8Lqg4zL |
| Liz Hiles @mirletaliz #PatientChat |
| Patient Chat @patientchat Time to start sharing closing thoughts (CT) on what you learned, were reminded of, or can implement. Start your tweet w/ CT: #patientchat |
| Kara @RolltideKara @patientchat It means everything!One voice can make a difference there is advocates with @ZEROCancer all over the us and we have no problem sharing our stories with men. A lot of us have had moments where sharing our story impacted someone who was going through the fight! #patientchat |
| Social Health Network @socialhealthnet RT @BarbyIngle: T6 Cont. #PatientChat Even being nominated for many awards has been an unbelievable experience and then actually winning on… |
| Liz Hiles @mirletaliz #PatientChat |
| Christina Lizaso @btrfly12 RT @exceedhergrasp1: T4: A surprisingly large percentage of being a good advocate is being as open-minded as possible, while remaining into… |
| It'sME(Jaime) @exceedhergrasp1 T5: I am currently as involved as I can be. 2020/2021 has been a year of reassessing priorities, stepping back on one front to have the bandwidth to step forward on another, because it is (maybe temporarily) more important. #patientchat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR [REDACTED USER] #patienchat LOL, I'm confuse....but maybe it's just my foggy brain.... it seems I'm communicating. it would be better if we were in my pace ( all invited ) for tamales and margaritas....communicating@patientchat #patientchat |
| Alan Brewington @abrewi3010 I was nominated too. Look for me too please #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| Amanda G @LAlupusLady RT @exceedhergrasp1: T5: I am currently as involved as I can be. 2020/2021 has been a year of reassessing priorities, stepping back on one… |
| Liz Hiles @mirletaliz Agreed! I am working on my fluency. I'm not quite yet comfortable enough to do this en espanol yet! #PatientChat |
| Amanda G @LAlupusLady Shout out to everyone nominated #WEGOHealthAwards https://t.co/y48p2vikIQ |
| The Sickle Cell Health Coach @scdhealthcoach T4: Patient Advocacy is hard work! Since taking on the role, I learned about marketing, public relations, mentoring, health care and so much more. Never underestimate the power of a patient leader. #patientchat @patientchat |
| endoQueer @endoQueer CT: Take breaks from your advocacy if you need to, because part of being a good advocate for yourself is listening to your body. #patientchat |
| endoQueer @endoQueer CT: Continue to network, get to know others, hold medical professionals accountable and manage your symptoms and conditions. #patientchat |
| Liz Hiles @mirletaliz #PatientChat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat A6: A huge honor for me: someone thanking me for sharing my story via blogs/podcast guest appearances, then connecting with those people. I was also shocked to find that I somehow ended up on Top Advocates to watch list from @iPainLivingMag. Must be a misprint. 😂 #PatientChat |
| Liz Hiles @mirletaliz #PatientChat |
| Barby Ingle Official @BarbyIngle RT @RareDiseaseDad: @patientchat A6: A huge honor for me: someone thanking me for sharing my story via blogs/podcast guest appearances, the… |
| Christina Lizaso @btrfly12 Closing Thoughts: I love when I get a chance to pop in for even a few minutes of #patientchat It is always inspiring to see folks so passionate about advocating for themselves and others in the health space. Thanks for all you each do! |
| Liz Hiles @mirletaliz #PatientChat |
| @ @patientchat CT: I am so grateful that I began this journey having no idea on what my life would look like years later. I never want anyone to wait 10+ years for a diagnosis like I have. I truly want to help and grow as much as I can. #patientchat | |
| Social Health Network @socialhealthnet @lilithacacia @lbdeck [REDACTED USER] @stacy_hurt @dion_langley @LaraBloom Yes, we have so many amazing patient leaders including yourself! #patientchat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR AM I the only one feeling not too good right now, and still typing? LOL @patientchat #patientchat my whole world is changing by the minute with my health support, might need to find new doctorsAm https://t.co/srjit5MfIM |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos THIS.👇🏼 Nominate & Endorse your favorite Patient Leader here: https://t.co/fo6m11qZmA @wegohealth #patientchat |
| It'sME(Jaime) @exceedhergrasp1 T3: Oh, seriously? I forgot my PINNED tweet! It's temporarily closed as we prep for debuting Section 2, but please check out the main page here: https://t.co/VF1g2YGOyW #patientchat |
| Social Health Network @socialhealthnet RT @lilithacacia: @patientchat CT: I am so grateful that I began this journey having no idea on what my life would look like years later. I… |
| Janice Cowden @JaniceTNBCmets T6: Podcasts, interviews, patient testimonials, #MBC campaigns. But the best recognition is simple gratitude from others I’ve helped, or their loved ones. Acknowledgement for educating others about #MetastaticBreastCancer, or sharing my story as a #PatientAdvocate #PatientChat |
| Adam Johnson - DadVocate @RareDiseaseDad @btrfly12 Nice to see you here, Christina! Thank you for your continued support & encouragement, & for the work you do as well. Much appreciated! #PatientChat |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos Have a happy healthy weekend everyone! #patientchat https://t.co/1nOqbS6Vcx |
| Liz Hiles @mirletaliz #PatientChat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @patientchat #patientchat is it my imagination or we have a lot of powerful women here, and missing some more men? maybe I'm not seeing their posts. |
| Global Parents for Eczema Research @eczemaresearch T6: We are honored & humbled to be nominated for 2 awards this year! 🎉One from @podcastawards for our parent-hosted podcast, Eczema Breakthroughs & one via @wegohealth for "Best Team Performance"!👈That one is special since we're small & work as a tight-knit team.#patientchat |
 | Danielle Pardue @Actorielle RT @patientchat: T5: In what ways do you hope to get more involved in your community for the rest of 2021? #patientchat https://t.co/X3QwMk… |
| Danielle Pardue @Actorielle RT @wegohealth: T3 We also have some free resources for patient leaders to take that next step in their advocacy efforts. One of them is ca… |
| Alan Brewington @abrewi3010 CT as @justagoodlife says: it’s just a bad day not a bad life. Considering this week I think it’s more important than ever to remember it’s ALSO ok to be ok. It’s the reason we work this hard in the first place! #patientchat |
| Read the Fine Print @AnitaRezz @patientchat CT: I've learned so much over the years and even more today about how to share my stories and become a better #mentalhealthwarrior #patientchat |
| Amanda G @LAlupusLady Thank you @power4patients @wegohealth and @patientchat for a fabulous #PatientChat https://t.co/8L16LsQRi0 |
| Fibromyalgia National Health Organization @teamfibro @patientchat A6: Honored and grateful - Hero of Hope winner with @iPainFoundation & @wegohealth winner in 2019 #patientchat |
| Danielle Pardue @Actorielle RT @wegohealth: T2 When it comes to get started in the online health community, getting connected is the first thing you want to do. Try se… |
| Patient Chat @patientchat @LNGTERMSURVIVOR I think you may have a point there. There are a lot of powerful women in the house today. #patientchat |
| Patient Chat @patientchat I want to give a HUGE thank you to Seth from @wegohealth for joining us today and being our guest host! #patientchat |
| Danielle Pardue @Actorielle RT @wegohealth: T1 There are so many avenues of patient advocacy - whether posting on social media, collaborating with healthcare or workin… |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR [REDACTED USER] @patientchat You live in Scotland? #patientchat @patientchat I didn't know that, wow....LOVE from SF! https://t.co/CSR8dUK1bj |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos @wegohealth Thank you!! Such an empowering and inspiring experience every single time. Love it!! 💜 |
| Heather Von St James @HeatherVSJ @patientchat CT I love being involved with other patient leaders and seeing that we all have very similar goals and reasons why we so selflessly give of ourselves. We truly want to see a better future for patients with our diagnosis.. It's a very good thing :) #patientchat |
 | iPain Living Magazine @iPainLivingMag RT @RareDiseaseDad: @patientchat A6: A huge honor for me: someone thanking me for sharing my story via blogs/podcast guest appearances, the… |
| Janice Cowden @JaniceTNBCmets T6: I don’t need recognition, or to be awarded, for any of the advocacy work I do. At the end of each day, if I’ve helped even one person - that’s enough. #PatientChat |
| Adam Johnson - DadVocate @RareDiseaseDad @DimaHendricks @patientchat It sure is hard work. That's something I wasn't necessarily prepared for, especially emotionally. I wouldn't change it, but it can be taxing. Selfcare is important, for sure, just as it is for everyone. #PatientChat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime! |
| Social Health Network @socialhealthnet [REDACTED USER] Thank you to you and everyone else who joined us today. #patientchat |
| Social Health Network @socialhealthnet RT @endoQueer: CT: Continue to network, get to know others, hold medical professionals accountable and manage your symptoms and conditions.… |
| @ @patientchat @wegohealth This truly was an amazing experience! I would love to connect with everyone involved! #patientchat | |
| iPain Living Magazine @iPainLivingMag @RareDiseaseDad @patientchat It's no misprint... you are a #RareStar #HealthStar and #DadVocate Keep going! #PatientChat |
| Patient Chat @patientchat We appreciate you all for coming! If you're ever interested in being a guest host for a #patientchat, please send us a message! Enjoy your weekend everyone 😊 |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @J2Novack HELLO John, nice meeting you, it seems we're fewer men in the #patientchat than women.....interesting. Just checking.....wonder why....LOVE from SF |
| Adam Johnson - DadVocate @RareDiseaseDad @abrewi3010 Congrats, Alan! Exciting news! #PatientChat |
| Social Health Network @socialhealthnet Thank you everyone for joining us today! A huge shoutout to @patientchat and @power4patients for letting us co-host today's #patientchat |
| Fibromyalgia National Health Organization @teamfibro @patientchat A5: Collaboration is the key! Looking to continue building a more supportive and collaborative #Fibromyalgia community where we work together for changes. #patientchat |
| Patient Chat @patientchat Mark your calendars for our next Empowered #patientchat on Friday, August 6th! https://t.co/S3estSmfI5 |
| 𝐓𝐢𝐟𝐟𝐚𝐧𝐲 𝐊𝐚𝐢𝐫𝐨𝐬 @TiffanyKairos [REDACTED USER] @patientchat Oh yeah definitely! You can definitely host/join IG LIVE Chats. Great way to raise awareness. |
| rebecca trahan @takeheartlive #patientchat thanks for hosting. i am reminded that we are all connected and can lean on each other regardless if we've ever me. thank you @wegohealth for that. i would love to connect with others live in august, if interested write me. much good! #ontheroadwithrare @HCombHealth |
| Patient Chat @patientchat Keep the conversation going between chats with hashtag #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @patientchat My birthday! Count me in 😎 #patientchat |
| Patient Chat @patientchat @wegohealth @power4patients It was an honor to have you! #patientchat |
| Social Health Network @socialhealthnet @endoQueer @patientchat #patientchat https://t.co/q3GAL1LemD |
| Amanda G @LAlupusLady There’s something cool about wrapping up #PatientChat and then @MEnista likes your tweet - the synchronicity of living as an empowered patient leader and “Kindness Punk” in action. |
| Adam Johnson - DadVocate @RareDiseaseDad @exceedhergrasp1 I'm glad you're doing this, Jaime. A wonderful example. Sometimes we just continue to add things in, but don't take anything away, or step back to reevaluate. Thanks for sharing! #PatientChat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @patientchat HURRAY FOR POWERFUL WOMEN!! and I'm lucky to know a few of them....LOVE YOU LADIES!!!! #patientchat @patientchat #healthevoices https://t.co/8YTXwNszQ7 |
| It'sME(Jaime) @exceedhergrasp1 Closing out #patientchat! Thanks to all who engaged with me. You can find my profile on WEGO here: https://t.co/hHyFcJT411 |
| Social Health Network @socialhealthnet @patientchat Definitely a team effort, but definitely appreciate the opportunity! #patientchat https://t.co/rRlzHRZPU2 |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR [REDACTED USER] @patientchat There you are....:) HUGS @patientchat #patientchat LOTS OF LOVE from SF. |
| Patient Chat @patientchat @MightyCasey Wooooo 🥳🥳 !!! #patientchat |
| Social Health Network @socialhealthnet RT @AnitaRezz: @patientchat CT: I've learned so much over the years and even more today about how to share my stories and become a better… |
| Social Health Network @socialhealthnet RT @abrewi3010: CT as @justagoodlife says: it’s just a bad day not a bad life. Considering this week I think it’s more important than ever… |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR [REDACTED USER] @patientchat I'm trying, but I feel my life is going through changes. New social workers, nurses, doctors.....and it's also the time for housing checking, etc, etc.... #patientchat @patientchat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR [REDACTED USER] Just saying hello. Glad you're here. #patientchat @patientchat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR By the way, extra question, how many of you also have CAREGIVING in your minds- personally-, for others, or hear it in your groups? I wonder. MOM here.... #patientchat @patientchat https://t.co/TQ4EVGQ5sh |
| The Sickle Cell Health Coach @scdhealthcoach Y’all... I am the Susan Lucci of the @wegohealth award! Always nominated. Never win. 😂😂#patientchat https://t.co/ryanFdGKxK |
| The Sickle Cell Health Coach @scdhealthcoach Best of luck to all of the #WEGOHealthAwards nominees #patientchat https://t.co/TxyhmtR1oa |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR @J2Novack [REDACTED USER] are we the only guys here? interesting :) REPRESENTING!!!! How you are guys doing? SF here..... #patientchat @patientchat |
| Jesus Guillen, Advocate/Activist/HUMAN @LNGTERMSURVIVOR [REDACTED USER] @patientchat Amanda!!!! sometimes, you should share with is, some of the pictures of nature or cities surrounding you. I love that when people share where they are. #patientchat @patientchat https://t.co/lKvrD45Uop |
#patientchat content from Twitter.