#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Ma vie de zèbre • A-Danielle G. @ADanGrenier RT @patientchat: Join us in a few minutes for the Empowered #patientchat. Info/Topics: Join us in a few minutes for the Empowered #patientchat. Info/Topics: https://t.co/WO3ZHqIMxa |
 | 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. |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| Patient Chat @patientchat I’m Nykema from @power4patients and I’m looking forward to today’s #patientchat 😊 |
 | Carly Flumer (she/her) @carlyflumer Hi, I’m Carly, an #AYA #thyca advocate and patient. #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat Hi all! I'm Annie-Danielle (Ma vie de zèbre - My Life as a Zebra), francophone voice for rare disease in North America from Québec (Canada), always happy to join #PatientChat! |
 | Alexa Jett 🦋 @ohhiialexa Hey, #patientchat friends! I’m Alexa. I advocate for thyroid cancer, and AYA’s (adolescents/young adults) with cancer. Always hyped to be here! |
| Patient Chat @patientchat @carlyflumer Hi Carly, Happy Friday! #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #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 |
| Patient Chat @patientchat @ADanGrenier Happy to have you here today! #patientchat |
| Alexa Jett 🦋 @ohhiialexa @patientchat @carlyflumer Carly and I are both happy that it’s Friday! 😂 #patientchat |
 | Patient Empowerment Network @power4patients Happy Friday #patientchat! I'm Kara and I'm excited to be here today |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines at https://t.co/XO3X3JyAcV #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is Moving Awareness Into Action https://t.co/WO3ZHqIMxa |
| Patient Empowerment Network @power4patients RT @patientchat: Today's #patientchat topic is Moving Awareness Into Action https://t.co/WO3ZHqIMxa |
 | Alan Brewington @abrewi3010 Currently on a work call, will try to participate #patientchat |
| Patient Chat @patientchat @ohhiialexa Hi Alexa! Always happy to have you here! #patientchat |
 | Adam Johnson - DadVocate @RareDiseaseDad @patientchat Hi all. I'm Adam, a rare disease patient DadVocate (Dad who is also an advocate). Glad to be here today! #patientchat I'm also equipped with dad jokes, & you might know me from my new rap name (we can arrange for digital autographs after the chat😂): https://t.co/75d2FZOSZu |
| Patient Chat @patientchat I will introduce new Topics with T1, T2... Please include corresponding T# at front of answer - hard to remember but helpful #patientchat |
 | Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey Greetings, all. The Mighty Mouth checking in from my coronacave in Richmond VA. Multitasking at scale today since back/spine pain + mobility issues are lightened a bit, tryna get as much done as I can before the hammer drops on me again. #patientchat |
| Alexa Jett 🦋 @ohhiialexa @RareDiseaseDad @patientchat LOL!! 😂 You’ll hit the top of the charts on Spotify before we know it. Glad I can say I “knew you” before your fame. #patientchat |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
 | HereditaryNeuropathy @CMTNeuropathy RT @patientchat: Join us in a few minutes for the Empowered #patientchat. Info/Topics: Join us in a few minutes for the Empowered #patientchat. Info/Topics: https://t.co/WO3ZHqIMxa |
 | Patient Worthy @PatientWorthy Hi #patientchat! This is Patient Worthy. We share news and stories related to the #raredisease community, and work to amplify patient voices. Excited to chat with you today. |
| HereditaryNeuropathy @CMTNeuropathy RT @patientchat: You can find the topics we’ll cover on today’s Empowered #patientchat with @CMTNeuropathy here:https://t.co/WO3ZHqIMxa |
| Patient Chat @patientchat T1: I have an interest in patient advocacy, but where can I begin? #patientchat https://t.co/wpsqUYBjeD |
| Patient Empowerment Network @power4patients RT @patientchat: T1: T1: I have an interest in patient advocacy, but where can I begin? #patientchat https://t.co/wpsqUYBjeD |
| HereditaryNeuropathy @CMTNeuropathy RT @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 |
| Alexa Jett 🦋 @ohhiialexa @RareDiseaseDad I am, thank you! Good to see you. #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat T1 Many ways one can start advocating! Social media is one. Creating a blog or website. Asking your hospital if they have patient-partner programs. Joining groups like @wegohealth Even just sharing your experience with your family & friends is advocacy! #PatientChat |
| HereditaryNeuropathy @CMTNeuropathy @patientchat Looking forward to sharing my journey #patientchat |
| Patient Chat @patientchat @PatientWorthy Thank you for joining us today! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey BTW + ICYMI, last week's @hilarious_is podcast was with @carlyflumer - "there is no good cancer" and more! https://t.co/UCO6Ysl5Ia #patientchat |
| Alan Brewington @abrewi3010 A1 chats like #patientchat are the best place to start. Great for meeting others & developing messaging |
| Patient Chat @patientchat RT @ADanGrenier: @patientchat T1 Many ways one can start advocating! Social media is one. Creating a blog or website. Asking your hospital if they have patient-partner programs. Joining groups like @wegohealth Even just sharing your experience with your family & friends is advocacy! #PatientChat |
 | Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph Hi everyone! Christie here from the Hudson Valley in NY. I'm the founder of How to Talk to Your Doctor and a public health consultant. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T1: I had some ideas about this a few weeks ago & shared a thread. I’m sure there’s much more, in terms of quality & quantity, that can be included from our #patientchat community. I used #RareAdvocacyAdvice: https://t.co/7gsiIbxLck |
| Carly Flumer (she/her) @carlyflumer T1: It all starts with sharing your story. Whether it be on social media, through a blog, or an organization, that’s advocacy, and it’s powerful. #patientchat |
| Alexa Jett 🦋 @ohhiialexa T1: Contact your cancer/chronic/rare organization, and if there isn’t one yet, look for broader groups! Like those that specialize in rare diseases. Usually, they can point you in the right direction. #patientchat |
| HereditaryNeuropathy @CMTNeuropathy @patientchat #T1 Start by searching for groups, keywords, influencers on social media related to your condition as well as organizations that fund research and programs for your patients community. #patientchat |
| Patient Chat @patientchat RT @CMTNeuropathy: @patientchat #T1 Start by searching for groups, keywords, influencers on social media related to your condition as well as organizations that fund research and programs for your patients community. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @ADanGrenier @patientchat @wegohealth Excellent points, especially about sharing your experiences! #patientchat |
| Patient Empowerment Network @power4patients RT @carlyflumer: T1: T1: It all starts with sharing your story. Whether it be on social media, through a blog, or an organization, that’s advocacy, and it’s powerful. #patientchat |
| Patient Chat @patientchat RT @carlyflumer: T1: T1: It all starts with sharing your story. Whether it be on social media, through a blog, or an organization, that’s advocacy, and it’s powerful. #patientchat |
| Patient Chat @patientchat RT @ohhiialexa: T1: T1: Contact your cancer/chronic/rare organization, and if there isn’t one yet, look for broader groups! Like those that specialize in rare diseases. Usually, they can point you in the right direction. #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @ohhiialexa True! It’s not a competition, we all want the same thing, so we’re always happy to help one another! #PatientChat |
| Patient Worthy @PatientWorthy A1. You can meet over social media via #patientchat, other chats, or groups. Sharing your story is also great for advocacy - if interested, we are looking for contributors: https://t.co/ll3uA0jF24 Finding organizations around your condition can also offer advocacy & community. |
| Patient Chat @patientchat Topic 2 (T2:) coming up..... #patientchat |
| Alexa Jett 🦋 @ohhiialexa @MightyCasey @hilarious_is @carlyflumer NO 👏🏻 GOOD 👏🏻 CANCER 👏🏻 (And it’s real too, unlike what certain people think, Carly! 🙄) #patientchat |
| Christie F. VanHorne, M.Ed, MPH (she/her) @christie_mph @patientchat A1. I think it's important to find people with your condition or a similar condition. Not only does it help with morale and mental health support, but there may be specific things you need to advocate for, and this can help. FB groups, Twitter, local/national orgs #patientchat |
| Alan Brewington @abrewi3010 A1 looking to go to conferences like #Medx is a great way to develop advocacy. What can you provide the conference, what can the conference provide you? Are great starting questions #patientchat |
| Alexa Jett 🦋 @ohhiialexa @ADanGrenier Anything that helps fellow patients helps all patients! #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T1: Start by talking to patient leaders in your condition/issue community. See what their journey to advocacy was. Ask what resources they found valuable. I will also note that I no longer call myself an advocate, I'm an activist. Ain't asking. I'm demanding action. #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @MightyCasey @hilarious_is @carlyflumer Ugh, how can people even think it can be comforting to hear, right? I’m bookmarking to check out later, thank you! #patientchat |
| Patient Chat @patientchat T2: In what ways do you advocate for your disease community? #patientchat https://t.co/voeT4I90DE |
| Adam Johnson - DadVocate @RareDiseaseDad @MightyCasey Coronacave 😂. This will be me when I finally emerge. #patientchat https://t.co/HS0la1r4H6 |
| HereditaryNeuropathy @CMTNeuropathy @patientchat T1 For me it was HNF non-profit organization! #patientchat |
 | Matthew Katz, MD 🟦 @subatomicdoc RT @MightyCasey: T1: T1: Start by talking to patient leaders in your condition/issue community. See what their journey to advocacy was. Ask what resources they found valuable. I will also note that I no longer call myself an advocate, I'm an activist. Ain't asking. I'm demanding action. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T2: T2: In what ways do you advocate for your disease community? #patientchat https://t.co/voeT4I90DE |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @RareDiseaseDad Dude, that'll be all of us 🤣 #patientchat |
| Alan Brewington @abrewi3010 A1 people/patients over silos. Don’t always have to talk to people with same diagnosis #patientchat |
| Carly Flumer (she/her) @carlyflumer T2: @ohhiialexa and I recently started a support group with @ancan501c3for #thyca patients. 🦋 #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat T2 Through my website, social media, talking with HCW & anyone who’ll listen, by being a patient-partner (giving patient perspective in focus groups, participating in research, boards, educating future HCW) & more! #PatientChat |
| Patient Worthy @PatientWorthy A2. We amplify voices by letting people share their own stories and experiences. We also partner with #raredisease advocacy groups to offer information, events, and other tools! https://t.co/KpY76r50SB #patientchat |
| Alexa Jett 🦋 @ohhiialexa @carlyflumer Might be biased, but it’s pretty great! #patientchat https://t.co/IXCzaxRvfJ |
| Patient Worthy @PatientWorthy @abrewi3010 Love this! #patientchat |
| Alexa Jett 🦋 @ohhiialexa T2: I personally advocate in the academic, political, and community sectors. I want to make college/education more accessible to the patient community. I talked to administration at a university about ways to help make that happen. #patientchat |
| Patient Worthy @PatientWorthy @ADanGrenier @patientchat How has your experience been with research and focus groups? #patientchat |
| Alan Brewington @abrewi3010 A2 advocacy is about my entire chronic patient story, not just the negative. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T2: I'm bad, I'm nationwide. Srsly, tho, I'm kinda everywhere. My core communities are #bcsm + @BeLikeLight, I'll show up at the opening of an envelope if I get to talk about #datarights #humanrights and/or #healthpolicy at the ground level. #patientsincluded #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T2: I try to advocate for my disease community, & the #RareDisease community at large, on social media (#patientchat is wonderful!) & through my website/blog. I’m really excited about & proud of some upcoming advocacy work my 11 y/o daughter has going: https://t.co/CQ98FUknki |
| Alexa Jett 🦋 @ohhiialexa @abrewi3010 YES! Branch out, that’s how growth and learning happens. #patientchat |
| Alan Brewington @abrewi3010 A2 less, but quality content triumphs over bad quality content. More is not always better #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @PatientWorthy @patientchat Usually very good! Getting asked more and more (also usually paid), through a patient-partner university group who get asked a lot for our input. Many are research projects. Always very happy to hear what we have to say! The more I do = the more I do! #PatientChat |
| Alan Brewington @abrewi3010 RT @ohhiialexa: @abrewi3010 YES! Branch out, that’s how growth and learning happens. #patientchat |
| Patient Chat @patientchat Topic 3 (T3:) coming up..... #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T2: and then, of course, there's my aforementioned podcast Healthcare Is HILARIOUS! where I talk to many people across the health/tech/policy landscape. And also occasionally to myself, as I did this week. And no paywall. https://t.co/Rd0qNWE6NW #patientchat |
| Patient Chat @patientchat T3: What is the best way to search for a specialist within your disease area? Can you share your go-to resource? #patientchat https://t.co/nHZsTavVpk |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @RareDiseaseDad: @patientchat T2: @patientchat T2: I try to advocate for my disease community, & the #RareDisease community at large, on social media (#patientchat is wonderful!) & through my website/blog. I’m really excited about & proud of some upcoming advocacy work my 11 y/o daughter has going: https://t.co/CQ98FUknki |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat T3 We don't have much specialists in my diseases area, most are rare. So my go-to resource is the @maladorphelines Regroupement québécois des maladies orphelines (Québec coalition for orphan diseases) https://t.co/GAjIYqrOdc #PatientChat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T2b: I'm also excited to continuing to learn more about advocacy & various approaches people take. One upcoming venture is my first #RareAcrossAmerica. I'm looking forward to sharing my story to help impact federal policy. @RareAdvocates webinars are wonderful! #patientchat |
| Alexa Jett 🦋 @ohhiialexa T3: OTHER PATIENTS! Ask around within your community. Check reviews online, search forums or on @teaminspire. #patientchat |
| Alan Brewington @abrewi3010 A3 referrals and trust. Good to remember it’s ok to fire a doc. Just remember doc shopping isn’t good for quality of life #patientchat |
| Carly Flumer (she/her) @carlyflumer T3: Usually my primary care doctor or support groups for my cancer in my area. If not those, then sites with reviews and ratings like @Zocdoc and @Healthgrades. #patientchat |
 | Inspire @InspireIsHealth RT @ohhiialexa: T3: T3: OTHER PATIENTS! Ask around within your community. Check reviews online, search forums or on @teaminspire. #patientchat |
| HereditaryNeuropathy @CMTNeuropathy @patientchat #T2 A documentary about my life was released in 2013, “Bernadette” which has been viewed worldwide @cinemalibre. I also worked w/ local officials advocating for & planning special events such as ribbon cuttings for beach access! @mobimat_us. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T3: My go-to resources are ProPublica's Surgeon Scorecard for common surgical procedures (joint repl etc.). Also a big fan of their Dollars for Docs project, so I know if MD I'm working with is in pharma's pocket. Also a big fan of Medscape (MD side of WebMD) #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: What is the best way to search for a specialist within your disease area? Can you share your go-to resource? #patientchat https://t.co/nHZsTavVpk |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @CMTNeuropathy @patientchat @cinemalibre @MobiMat_US Wow, that’s very cool! #patientchat |
| Patient Worthy @PatientWorthy A3. Speaking to your PCP, or to other patients, may be a good start to find referrals for a specialist. You can also reach out to an advocacy organization, who may be able to connect you to someone or have additional insights on where to find the best care. #patientchat |
| Patient Chat @patientchat Topic 4 (T4:) coming up..... #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T3 (cont): although my resource list is kinda endless, since much of my work is related to translating medical-ese in ways average humans can understand. Also big shoutout to sites like @chcosts that rip curtains down on cost details for dx/tx. #patientchat |
| Patient Chat @patientchat T4: How do you communicate with a healthcare professional who is unfamiliar with your diagnosis? #patientchat https://t.co/1hEsD4XHrt |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T3a: Persistence & being your own advocate is essential. Like so many others, I’ve bounced around to many, many doctors & specialists in search of a diagnosis, locally and regionally. After that, I was finally able to make connections with related organizations. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T3b: If those types of organizations already exist, it can be very helpful. For my #RareDisease, @MitoAction has been so helpful for me & many others. I didn’t know how to get to this group until I had a diagnosis. #patientchat https://t.co/yeGZ6xCKI0 |
| Alexa Jett 🦋 @ohhiialexa T4: Be honest! Explain how it impacts you physically, mentally, financially, or any other way. Understand that people don’t know what they don’t know, and help them grow as a provider. #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat T4 I learned to start by asking if they know about it, be confident in what I know & explain with their words (while not trying to sound like I’m a pro myself). Use my elevator pitch. Short, technical, quick. #PatientChat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T3: my bedrock approach on any new clinical relationship is to arrive with a tight list of questions (I'm a journo) and ask 'em. If MD/NP/whomevs welcomes that, game on. If not, see ya. #patientchat |
| HereditaryNeuropathy @CMTNeuropathy @PatientWorthy @ADanGrenier @patientchat T# The work I do supports research and amplifies patient voices so that industry and the @US_FDA has a better understanding of the disease such as #charcotmarietooth and can design better clinical trials #patientchat |
| Patient Chat @patientchat RT @ohhiialexa: T4: T4: Be honest! Explain how it impacts you physically, mentally, financially, or any other way. Understand that people don’t know what they don’t know, and help them grow as a provider. #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat T4b If they ask more then I give more. …and if I notice they don't wanna listen, as sadly happens, I don't insist, don’t try to convince or give articles, etc. It's not worth it. Most of the time they want to learn more though! #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T4: T4: How do you communicate with a healthcare professional who is unfamiliar with your diagnosis? #patientchat https://t.co/1hEsD4XHrt |
| Alan Brewington @abrewi3010 A4 make sure you emphasize your current quality of life, both good and bad. Always use quality of life as baseline #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T4: I'm a walking, talking medical record. I keep it tight, specific to what relates to clinic visit. Big believer in #participatorymedicine, where patient is partner vs meat puppet. I will not accept being treated like a meat puppet. Ever. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T4a: Such a challenge for me, especially under duress. Not many HCP's are familiar with mitochondrial myopathy or extrinsic restrictive disease. Even the meds/supplements I’m taking are relatively unknown. I give a quick rundown w/the most pertinent information. #patientchat |
| Carly Flumer (she/her) @carlyflumer @MightyCasey Oh my gosh, Casey, I need your confidence. 😍🤣 #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey RT @ohhiialexa: T4: T4: Be honest! Explain how it impacts you physically, mentally, financially, or any other way. Understand that people don’t know what they don’t know, and help them grow as a provider. #patientchat |
| HereditaryNeuropathy @CMTNeuropathy @patientchat #T3 The HNF website has over 20 designated Centers of Excellences, where healthcare teams are experienced in CMT & have multidisciplinary providers covering the wide spectrum of needs under one roof. We also have a Dr. directory. #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @abrewi3010 Such a good tip! I should do that more… #patientchat |
| Alan Brewington @abrewi3010 RT @ADanGrenier: @abrewi3010 Such a good tip! I should do that more… #patientchat |
| Patient Chat @patientchat Topic 5 (T5:) coming up..... #patientchat |
| HereditaryNeuropathy @CMTNeuropathy RT @RareDiseaseDad: @patientchat T3a: @patientchat T3a: Persistence & being your own advocate is essential. Like so many others, I’ve bounced around to many, many doctors & specialists in search of a diagnosis, locally and regionally. After that, I was finally able to make connections with related organizations. #patientchat |
 | Stacey Tinianov (she/her) MPH, BCPA @coffeemommy @MightyCasey "I will not accept being treated like a meat puppet. Ever." Oh Casey, your tweets simultaneously warm my heart AND tickle my funny bone. Thank you for being you. Thank you for being authentic. And thank you for being such an amazing activist for health care. #patientchat |
| Patient Chat @patientchat T5: How do you stay aware of active clinical trials and recent research in your disease area? #patientchat https://t.co/zk8GI6OuDb |
| Adam Johnson - DadVocate @RareDiseaseDad @malkabethwendy I hope the break served you well. I'm not sure if you've felt the same way, but for me, advocating can be quite exhausting physically, emotionally, & mentally. I wasn't really prepared for this (& sometimes I'm still not). All the best to you as you restart in March! #patientchat |
| HereditaryNeuropathy @CMTNeuropathy @patientchat #T4 HNF provides educational CMT courses and assessment tests for hundreds of neurologists across the world. We also publish educational articles in medical magazines and provide presentations at international medical conferences. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @carlyflumer Honey, I talked my way out of police custody in Saudi (true story). I was in first wave of net TV news audio/transmission engineers (oy, the hazing + misogyny 🙄). Military kid ergo always "new kid". I'm bulletproof at this point. #patientchat https://t.co/iHgmAtCPoC |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat T5 Sadly, never heard of clinical trials for any of my rare diagnoses in the past 10 yrs+ but I stay on top of research by subscribing to newsletters of rare disease orgs, following accounts on social media, subscribing to PubMed alerts, watching webinars, etc. #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @coffeemommy #patientchat https://t.co/D5GFM03vgH |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: How do you stay aware of active clinical trials and recent research in your disease area? #patientchat https://t.co/zk8GI6OuDb |
| HereditaryNeuropathy @CMTNeuropathy RT @patientchat: T4: T4: How do you communicate with a healthcare professional who is unfamiliar with your diagnosis? #patientchat https://t.co/1hEsD4XHrt |
| Alexa Jett 🦋 @ohhiialexa T5: Industry needs to get better about reaching patients, and making clinical trials more accessible. There also needs to be better participation and access in the rural communities. You shouldn’t have to travel 4+ hours to contribute to science #patientchat |
| HereditaryNeuropathy @CMTNeuropathy @patientchat #T5 I’m part of HNF’s Global Registry of Inherited Neuropathies (GRIN) which collects important patient data through a series of surveys and notifies me if I am matched to participate in a new trial. #patientchat |
| Carly Flumer (she/her) @carlyflumer T5: I work with clinical trials daily, so that’s an easy one. 😄 #patientchat |
| HereditaryNeuropathy @CMTNeuropathy RT @patientchat: T5: T5: How do you stay aware of active clinical trials and recent research in your disease area? #patientchat https://t.co/zk8GI6OuDb |
| HereditaryNeuropathy @CMTNeuropathy RT @patientchat: T3: T3: What is the best way to search for a specialist within your disease area? Can you share your go-to resource? #patientchat https://t.co/nHZsTavVpk |
| HereditaryNeuropathy @CMTNeuropathy RT @patientchat: T2: T2: In what ways do you advocate for your disease community? #patientchat https://t.co/voeT4I90DE |
| HereditaryNeuropathy @CMTNeuropathy RT @patientchat: T1: T1: I have an interest in patient advocacy, but where can I begin? #patientchat https://t.co/wpsqUYBjeD |
| HereditaryNeuropathy @CMTNeuropathy RT @patientchat: Today's #patientchat topic is Moving Awareness Into Action https://t.co/WO3ZHqIMxa |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat T5: For me, this comes back to orgs that support #Mito patients. They’re in the loop & are often integral in the information gathering/dissemination process. This is another reason to join a group for your disease, or consider making one of there isn’t one already. #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @RareDiseaseDad @malkabethwendy I noticed advocacy, if public speaking, writing or meetings, is energizing to me. Social media: depends. Back when I was running an organization, as well as support groups: totally draining. Depends on personality & situations, I think! #patientchat |
| HereditaryNeuropathy @CMTNeuropathy RT @carlyflumer: T1: T1: It all starts with sharing your story. Whether it be on social media, through a blog, or an organization, that’s advocacy, and it’s powerful. #patientchat |
| Alexa Jett 🦋 @ohhiialexa @carlyflumer Are there any trials in the works to cure “good cancer” mentalities? Asking for a friend....#patientchat |
| Patient Worthy @PatientWorthy A5. That's our job! We do a lot of research, but will also hear about news, clinical trials, and other information via our partners. #patientchat |
| HereditaryNeuropathy @CMTNeuropathy @PatientWorthy @RareDiseaseDad @patientchat Thank you for being on with us!! #cmtwegotthis #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 |
 | Beth Morton @beth_morton Popping in late! A1. Twitter is a great place to start! You can connect with others who have your condition/disease, as well as organizations that do advocay in that area. But remember, sharing your story here is advocacy, too! #PatientChat |
| Carly Flumer (she/her) @carlyflumer @ohhiialexa Girllll, I WISH. I’m done with ignorance. 🤬 #patientchat |
| Patient Chat @patientchat @beth_morton Better late than never! Thanks for joining us :) #patientchat |
| Alexa Jett 🦋 @ohhiialexa @carlyflumer Let me start the grant process! 😂 #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey T5: not in clinical trial hunt personally (at the moment) but recommend checking out emerging digital trial options. F'rinstance, @Medidata (HT @stales 😎) And there's always ClinicalTrials-dot-gov, but pack a lunch. https://t.co/cFMAsu4Vbx #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientchat CT Always nice to chat here! Learned a few tips, as always, and glad to discuss about #advocacy ! Have a great weekend everyone! Stay #zebrastrong #patientchat |
| Beth Morton @beth_morton A2. I work behind the scenes on research with a few organizations. I support other organizations' events (raising money and awareness). But my own project is #MigraineChat which is a chat, but also a space for people to talk #migraine anytime! #PatientChat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier @patientsfirstcd @patientchat When they have done the research it’s usually a shock and you’re like « will you marry me? » 😂 #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: Time to start sharing closing thoughts (CT) on what you learned, were reminded of, or can implement. Start your tweet w/ CT: #patientchat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey @ADanGrenier @RareDiseaseDad @malkabethwendy I've really felt that loss of in-the-room energy feedback since 'rona landed. After years of constant travel for meetings and cons, the last 10 months have really de-energized me ... #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat CT: There's so much to consider when it comes to advocacy. Many avenues to pursue, yet when we first start, it's overwhelming (at least it was for me). Connections, leaning into communities (i.e. #patientchat), supporting & being supported are all essential. One step at a time! |
| Alexa Jett 🦋 @ohhiialexa CT: Every #patientchat makes me realize more and more how I wish pharma/medical science/medical schools/etc had more patient panels and input. I’m certain we’d have a better society. |
| Alan Brewington @abrewi3010 CT if you find an interesting patient, on a chat like #patientchat, reach out to them regardless of diagnosis. New friends fight loneliness, they also open the next door. |
| HereditaryNeuropathy @CMTNeuropathy @patientchat CT# I learned of new rare disease organizations through this chat! Thank you! I heard other rare disease patients speak of the same problems I face and it motivates me to keep on advocating for my illness! Thank you @patientchat for having me:) #patientchat |
| Patient Chat @patientchat Thank you Bernadette @CMTNeuropathy for joining us today and sharing your thoughts! #patientchat |
| Beth Morton @beth_morton A3. @amfmigraine has a site to look up headache specialists (https://t.co/w6nINwzCiF), but I also love this patient-vetted list on @migrainemeander's website: https://t.co/ImuPR0J2GR #PatientChat |
| Mighty #HeathenSlut Casey🇺🇦🌟 @MightyCasey CT: my never-ending manta here is Start where you are Use what you have Do what you can (Arthur Ashe) That's my guiding star. #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @patientchat CT: I probably said it better in the closing tweet of my #RareAdvocacyAdvice thread. #patientchat https://t.co/ayP2smuJO9 |
| Alan Brewington @abrewi3010 RT @MightyCasey: CT: CT: my never-ending manta here is Start where you are Use what you have Do what you can (Arthur Ashe) That's my guiding star. #patientchat |
| HereditaryNeuropathy @CMTNeuropathy @patientchat CT# Thank you so much!! It was a great chat! #patientchat |
| Patient Chat @patientchat Join us for a “Let’s Talk Mental Health” Empowered #patientchat on Friday, February 5th @ 10 AM PT| 1 PM ET! https://t.co/DqIn5bc5vT https://t.co/iOIyNa894u |
| HereditaryNeuropathy @CMTNeuropathy RT @patientchat: Thank you Bernadette @CMTNeuropathy for joining us today and sharing your thoughts! #patientchat |
| Beth Morton @beth_morton A4. Great question. I think I usually am trying to convey my major symptoms, how it impacts the reason I'm seeing them (comorbidities). I usually also try to give a global sense of impacts of the condition on my life. #PatientChat |
| Patient Chat @patientchat Keep the conversation going between chats with the hashtag #patientchat |
| Ma vie de zèbre • A-Danielle G. @ADanGrenier RT @patientchat: Join us for a “Let’s Talk Mental Health” Empowered #patientchat on Friday, February 5th @ 10 AM PT| 1 PM ET! https://t.co/DqIn5bc5vT https://t.co/iOIyNa894u |
| Beth Morton @beth_morton A5. I follow a bunch of #migraine/#headache journals and researchers here on Twitter, subscribe to newsletters and daily news alerts, and have some clinical trial alerts set up (but also occasionally check). #PatientChat |
| Adam Johnson - DadVocate @RareDiseaseDad @beth_morton Beth, this is such a wonderful example of someone creating a community to help & support. I don't have migraines, but I see the work you do with the chat & space designed to help those who do, & it's commendable. Thanks for all that you do there & elsewhere! 💚 #patientchat |
| Beth Morton @beth_morton Brain ran out of gas... occasionally check https://t.co/GDeufcyM63. #PatientChat |
| Adam Johnson - DadVocate @RareDiseaseDad @PatientWorthy Thank you for the work you do to help with this incredibly important endeavor, @PatientWorthy! It is much appreciated & incredibly valuable to so many! 💚 #patientchat |
 | Nush @djnush_ RT @RareDiseaseDad: @beth_morton Beth, this is such a wonderful example of someone creating a community to help & support. I don't have migraines, but I see the work you do with the chat & space designed to help those who do, & it's commendable. Thanks for all that you do there & elsewhere! 💚 #patientchat |
| Adam Johnson - DadVocate @RareDiseaseDad @MightyCasey @ADanGrenier @malkabethwendy I traveled, presented, & interacted with people (in education) before my condition rudely moved in. Adding a pandemic on top of that shortly thereafter is brutal. Hope we can all meet soon. Well, for my sake; others may not be so excited to put up with me in person! #patientchat |
#patientchat content from Twitter.