#patientchat Transcript
Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | 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. |
 | Christina Lizaso @btrfly12 RT @patientchat: You can find info on today’s Empowered #patientchat with @RareDiseases here: You can find info on today’s Empowered #patientchat with @RareDiseases here: https://t.co/BGtJtDobWQ https://t.co/xqXskHsTIy |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
 | Alexa Jett 🦋 @ohhiialexa Hello #patientchat! Grateful for another time we can come together and discuss important topics. I am Alexa Jett, thyroid cancer and AYA advocate in East Texas. Good to see everyone! ☺️ |
| Patient Chat @patientchat I’m Kara from @power4patients and I’m excited about today’s chat with @RareDiseases #patientchat |
| Patient Chat @patientchat We’re excited to have NORD @RareDiseases here, who is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services #patientchat |
| Christina Lizaso @btrfly12 Go glad things worked out for me to join along on today's #patientchat. I am passionate about community engagement and health. I co-moderate #gyncsm for gynecologic cancers. |
 | Patient Empowerment Network @power4patients RT @patientchat: You can find info on today’s Empowered #patientchat with @RareDiseases here: You can find info on today’s Empowered #patientchat with @RareDiseases here: https://t.co/BGtJtDobWQ https://t.co/xqXskHsTIy |
| Patient Chat @patientchat You can find out more about @RareDiseases and their work here: https://t.co/SNP6noScJ7 #patientchat |
 | Laurie Reed @LReedptadvocate @patientchat Hello! Laurie, patient advocate, joining from the Pacific Northwest where we're having a good soaking Spring rain! #patientchat |
 | NORD @RareDiseases Hello from NORD, the leading patient advocacy organization dedicated to patients with #rarediseases & the orgs. that serve them. Today we’re participating in a #patientchat tweetchat about #endingisolation. Follow along! |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
| Alexa Jett 🦋 @ohhiialexa @btrfly12 Yay!!! Christina at #patientchat!!! |
| NORD @RareDiseases @ohhiialexa Welcome to the #patientchat! We are excited to hear from you. |
| NORD @RareDiseases @btrfly12 Welcome to the #patientchat! We are excited to hear from you. |
| NORD @RareDiseases @LReedsbooks @patientchat Welcome to the #patientchat! We are excited to hear from you. |
| Christina Lizaso @btrfly12 RT @RareDiseases: Hello from NORD, the leading patient advocacy organization dedicated to patients with #rarediseases & the orgs. that serve them. Today we’re participating in a #patientchat tweetchat about #endingisolation. Follow along! |
| 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 You can view our Chat Etiquette and Guidelines at https://t.co/fs20NR954d #patientchat |
| Patient Empowerment Network @power4patients RT @RareDiseases: Hello from NORD, the leading patient advocacy organization dedicated to patients with #rarediseases & the orgs. that serve them. Today we’re participating in a #patientchat tweetchat about #endingisolation. Follow along! |
| Alexa Jett 🦋 @ohhiialexa @RareDiseases Thank you NORD for EVERYTHING you do for patients and caregivers of rare diseases everywhere! I have learned so much on the website about other important conditions. You help bring a voice and shine a light! #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is Ending Isolation: Tips for Connecting & Resources for Support https://t.co/BGtJtD6B5i https://t.co/0MKta0hEkJ |
| Christina Lizaso @btrfly12 @ohhiialexa I miss and always appreciate this cross-condition space. Always learn something and get inspired. #patientchat |
| Christina Lizaso @btrfly12 RT @patientchat: Today's #patientchat topic is Ending Isolation: Today's #patientchat topic is Ending Isolation: Tips for Connecting & Resources for Support https://t.co/BGtJtD6B5i https://t.co/0MKta0hEkJ |
| Christina Lizaso @btrfly12 RT @ohhiialexa: @RareDiseases Thank you NORD for EVERYTHING you do for patients and caregivers of rare diseases everywhere! I have learned so much on the website about other important conditions. You help bring a voice and shine a light! #patientchat |
 | Seth Rotberg @Srotberg15 Hi everyone! I’m Seth and I am the Patient EngagementManager at @teaminspire and Co-Founder of @_OurOdyssey_. Will be in and out of this chat. #patientchat |
| NORD @RareDiseases @Srotberg15 @teaminspire @_OurOdyssey_ Hey Seth! Welcome to the #patientchat! We are excited to hear from you. |
| Patient Chat @patientchat @BrettChinnLLC @_OurOdyssey_ Hi Brett! Be sure to include the hashtag #patientchat in your responses so we all can see :) |
| Seth Rotberg @Srotberg15 @ohhiialexa Nice to see you Alexa! 👋 #patientchat |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
| Alexa Jett 🦋 @ohhiialexa @Srotberg15 So good to see you, Seth! You haven’t been on a #patientchat in awhile so I’m excited! |
| Patient Chat @patientchat T1: From your personal or professional perspective, what causes isolation in your community? #patientchat https://t.co/GAjMAQTqFl |
| Patient Empowerment Network @power4patients RT @patientchat: T1: T1: From your personal or professional perspective, what causes isolation in your community? #patientchat https://t.co/GAjMAQTqFl |
| Seth Rotberg @Srotberg15 @RareDiseases @teaminspire @_OurOdyssey_ Always a pleasure to hop into these meaningful Twitter chats! #patientchat |
 | Beth Morton @beth_morton Hi #patientchat! I’m Beth. I have #migraine and advocate in that community. I also host a monthly #MigraineChat. |
 | Heather McCullen @H_SalemOaks Me at 12:55: I have to sit right here so I don't miss #patientchat Me Now: late for #patientchat |
| NORD @RareDiseases T1: Isolation can often result from anxiety and stress around a certain situation. The @CDCgov recently put together a great resource about coping with stress, read more: https://t.co/E5rARyPKem #patientchat #endingisolation |
| NORD @RareDiseases @beth_morton Hi Beth! Welcome to the #patientchat! We are excited to hear from you today. |
| Seth Rotberg @Srotberg15 RT @RareDiseases: T1: T1: Isolation can often result from anxiety and stress around a certain situation. The @CDCgov recently put together a great resource about coping with stress, read more: https://t.co/E5rARyPKem #patientchat #endingisolation |
| NORD @RareDiseases @MaryOCMack Hey Mary - thanks for joining the #patientchat! We're excited to hear from you. |
| Christina Lizaso @btrfly12 T1: Many of the gyn cancers are classified as rare cancers and services specific to them can be hard to find. Many feel like "tag-a-longs" to services mainly marketed as breast cancer services. What is available is online - which isn't ideal for everyone. #patientchat |
| Christina Lizaso @btrfly12 RT @RareDiseases: T1: T1: Isolation can often result from anxiety and stress around a certain situation. The @CDCgov recently put together a great resource about coping with stress, read more: https://t.co/E5rARyPKem #patientchat #endingisolation |
 | Alport Syndrome Foundation @AlportSyndFndn RT @RareDiseases: T1: T1: Isolation can often result from anxiety and stress around a certain situation. The @CDCgov recently put together a great resource about coping with stress, read more: https://t.co/E5rARyPKem #patientchat #endingisolation |
| Alexa Jett 🦋 @ohhiialexa T1: Not being believed that their condition is real is isolating! The thyroid cancer, chronic and rare disease crew can relate. In researching #SickleCell for RMC advocacy, patients have to fight for a simple acknowledgement of their pain! #patientchat |
| Beth Morton @beth_morton A1. In the #migraine community, living with frequent, disabling attacks can be isolating. It affects all of our senses. As much as we want to show up, migraine - like any chronic pain condition - can sometimes mean missing out on social activities. #patientchat |
| Christina Lizaso @btrfly12 RT @ohhiialexa: T1: T1: Not being believed that their condition is real is isolating! The thyroid cancer, chronic and rare disease crew can relate. In researching #SickleCell for RMC advocacy, patients have to fight for a simple acknowledgement of their pain! #patientchat |
 | Brett Chinn (she/her) @BrettChinnCoach RT @ohhiialexa: T1: T1: Not being believed that their condition is real is isolating! The thyroid cancer, chronic and rare disease crew can relate. In researching #SickleCell for RMC advocacy, patients have to fight for a simple acknowledgement of their pain! #patientchat |
| Patient Chat @patientchat Topic 2 (T2:) coming up... #patientchat |
 | Carly Flumer (she/her) @carlyflumer I’m late! It’s Carly, an #AYA #thyca warrior. :) #patientchat |
 | Jeff Dubin @Power2Patient T1: I think friends going AWOL, because of selfishness or awkwardness about discussing one's illness, is a key cause of isolation among those with chronic illness. #patientchat |
| Alexa Jett 🦋 @ohhiialexa RT @Power2Patient: T1: T1: I think friends going AWOL, because of selfishness or awkwardness about discussing one's illness, is a key cause of isolation among those with chronic illness. #patientchat |
| Patient Chat @patientchat T2: What online communities or resources do you connect with when you don’t feel like going out? #patientchat https://t.co/PzbDrQSe0F |
| NORD @RareDiseases T2: There are many excellent ways to stay connected when you can't or don't want to go out! We recently posed a similar question to our Facebook community and @TheMightySite followers - read their suggestions: https://t.co/egxu2k08DO #patientchat #endingisolation |
| Patient Empowerment Network @power4patients RT @patientchat: T2: T2: What online communities or resources do you connect with when you don’t feel like going out? #patientchat https://t.co/PzbDrQSe0F |
| Carly Flumer (she/her) @carlyflumer T1: Isolation is being told you have the “good” cancer. #thyroidwhatsthat #patientchat |
| Christina Lizaso @btrfly12 T1: With #cervicalcancer, there is still a lot of stigma surrounding HPV (which btw 80% of people will have at some point in their lives). This can make talking about your cancer experience with family and friends even harder. #patientchat |
| NORD @RareDiseases T2: For those who are tech savvy - schedule a zoom meeting with friends or send texts to loved ones to stay connected. Share your story w/ NORD and your story may be featured & shared with the #raredisease community: https://t.co/mHuVqI4hj4 #patientchat #endingisolation |
| Carly Flumer (she/her) @carlyflumer T2: @power4patients, @LacunaLoft, @ElephantsTea, @teaminspire, @_OurOdyssey_. #patientchat |
| Jeff Dubin @Power2Patient RT @ohhiialexa: T1: T1: Not being believed that their condition is real is isolating! The thyroid cancer, chronic and rare disease crew can relate. In researching #SickleCell for RMC advocacy, patients have to fight for a simple acknowledgement of their pain! #patientchat |
 | Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz A1: The weather can be too hot or too cold. Infectious illness season and #mentalhealth. #PatientChat |
| Alexa Jett 🦋 @ohhiialexa T2: @LacunaLoft is a safe place for me. I was in an eye patch for 2 weeks recently, and they were the first group who saw me in it. I felt so much better for the remaining patch time! @DansHouseOfHope + @ElephantsTea are family for life too ❤️ #patientchat |
| Seth Rotberg @Srotberg15 RT @ohhiialexa: T1: T1: Not being believed that their condition is real is isolating! The thyroid cancer, chronic and rare disease crew can relate. In researching #SickleCell for RMC advocacy, patients have to fight for a simple acknowledgement of their pain! #patientchat |
| Heather McCullen @H_SalemOaks T2: I'm not giving specifics but I've been spending a lot of time on Discord. I've always been an introvert, so this is just my normal life ... but extreme. #patientchat |
| Carly Flumer (she/her) @carlyflumer T2: My other badass #thyca women: @livinginsteil, @cancergirl730, and @ohhiialexa! 🦋 #patientchat |
| Seth Rotberg @Srotberg15 RT @RareDiseases: T2: T2: There are many excellent ways to stay connected when you can't or don't want to go out! We recently posed a similar question to our Facebook community and @TheMightySite followers - read their suggestions: https://t.co/egxu2k08DO #patientchat #endingisolation |
| Christina Lizaso @btrfly12 @carlyflumer I know a doctor who feels strongly that it is ok, under specific circumstances, and with a specific goal in mind to use the term "good cancer" but I just see that it harms too many to risk it. It can become a thorn too easily. #patientchat |
| NORD @RareDiseases T2: Want to #advocate for change without leaving your home? Take action on the @RareAction website: https://t.co/pGDSwuleVF to support initiatives in your state. #patientchat #endingisolation |
| Christina Lizaso @btrfly12 RT @patientchat: T2: T2: What online communities or resources do you connect with when you don’t feel like going out? #patientchat https://t.co/PzbDrQSe0F |
| Alexa Jett 🦋 @ohhiialexa Co-signed!!! (Swap me for Carly!!) 🦋💜 #patientchat |
| Alexa Jett 🦋 @ohhiialexa RT @carlyflumer: T1: T1: Isolation is being told you have the “good” cancer. #thyroidwhatsthat #patientchat |
| Christina Lizaso @btrfly12 RT @Power2Patient: T1: T1: I think friends going AWOL, because of selfishness or awkwardness about discussing one's illness, is a key cause of isolation among those with chronic illness. #patientchat |
| Alexa Jett 🦋 @ohhiialexa RT @btrfly12: @carlyflumer I know a doctor who feels strongly that it is ok, under specific circumstances, and with a specific goal in mind to use the term "good cancer" but I just see that it harms too many to risk it. It can become a thorn too easily. #patientchat |
 | Grumpy Pug (Kate)💜 @GrumpyPug17 RT @beth_morton: A1. In the #migraine community, living with frequent, disabling attacks can be isolating. It affects all of our senses. As much as we want to show up, migraine - like any chronic pain condition - can sometimes mean missing out on social activities. #patientchat |
| Carly Flumer (she/her) @carlyflumer @btrfly12 That makes me soooo mad 😠 #fakenews #patientchat |
| Alexa Jett 🦋 @ohhiialexa RT @RareDiseases: T2: Want to #advocate for change without leaving your home? Take action on the @RareAction website: T2: Want to #advocate for change without leaving your home? Take action on the @RareAction website: https://t.co/pGDSwuleVF to support initiatives in your state. #patientchat #endingisolation |
| Patient Chat @patientchat Topic 3 (T3:) coming up... #patientchat |
 | Ody @OdyO11 RT @patientchat: Today's #patientchat topic is Ending Isolation: Today's #patientchat topic is Ending Isolation: Tips for Connecting & Resources for Support https://t.co/BGtJtD6B5i https://t.co/0MKta0hEkJ |
| Christina Lizaso @btrfly12 T2: I obviously feel really comfortable with twitter groups like #patientchat and #gyncsm. I also have found great community at @smart_patients There really is no substitute for interacting w/ those who "get it" without a lot of explaining. |
| Patient Chat @patientchat T3: Who do you reach out to when you need to connect? #patientchat https://t.co/5Bn7fsW8Rj |
| Alexa Jett 🦋 @ohhiialexa RT @btrfly12: T2: T2: I obviously feel really comfortable with twitter groups like #patientchat and #gyncsm. I also have found great community at @smart_patients There really is no substitute for interacting w/ those who "get it" without a lot of explaining. |
 | Spencer Health Solutions @spencerhealth RT @patientchat: Today's #patientchat topic is Ending Isolation: Today's #patientchat topic is Ending Isolation: Tips for Connecting & Resources for Support https://t.co/BGtJtD6B5i https://t.co/0MKta0hEkJ |
| Patient Chat @patientchat RT @btrfly12: T2: T2: I obviously feel really comfortable with twitter groups like #patientchat and #gyncsm. I also have found great community at @smart_patients There really is no substitute for interacting w/ those who "get it" without a lot of explaining. |
| Spencer Health Solutions @spencerhealth RT @patientchat: You can find out more about @RareDiseases and their work here: You can find out more about @RareDiseases and their work here: https://t.co/SNP6noScJ7 #patientchat |
| NORD @RareDiseases T3: At NORD, our teams host weekly “check-in” calls to talk about how we’re doing under quarantine and keep in touch throughout the day via Google chat. Sometimes a gentle “hello 👋 ” can go a long way to comfort people from afar. #patientchat #endingisolation |
| Alexa Jett 🦋 @ohhiialexa @carlyflumer Or that your cancer isn’t real, especially if you are a young woman by a top researcher! 🙄#patientchat |
| Laurie Reed @LReedptadvocate @patientchat T1: Based on interviews with patients - Lack of knowledge of what resources might be available, fear of reaching out or possible rejection, feeling as if illness situation is unique and no one will understand. #patientchat |
| Ody @OdyO11 Hi, I'm late. I'm disabled due to complex illnesses. I'm from Europe. That's a very important and interesting topic today! I almost missed it. So I'll try to catch up. :) #patientchat |
| Ody @OdyO11 RT @patientchat: T1: T1: From your personal or professional perspective, what causes isolation in your community? #patientchat https://t.co/GAjMAQTqFl |
| NORD @RareDiseases @OdyO11 Welcome to the #patientchat! We are excited to hear from you today. |
| Beth Morton @beth_morton A2. There are some really well-moderated, supportive groups for people w/migraine. The #migraine community has a strong presence on Twitter, Facebook, and Instagram. I’m also reallly grateful that @miles4migraine has online support groups that meet regularly. #patientchat |
| Carly Flumer (she/her) @carlyflumer T3: My parents, close friends whom I trust and know my story. @tunaturns @Srotberg15 #tribelife #patientchat |
| Christina Lizaso @btrfly12 RT @RareDiseases: T2: T2: There are many excellent ways to stay connected when you can't or don't want to go out! We recently posed a similar question to our Facebook community and @TheMightySite followers - read their suggestions: https://t.co/egxu2k08DO #patientchat #endingisolation |
| Alexa Jett 🦋 @ohhiialexa T3: I always spend time with my cats when I feel sad. My kitty Sasha loves to purr, and just sitting petting her soft fur with her motor running is very comforting to me. Pets can really help with isolation and they don’t judge you! #patientchat |
| Christina Lizaso @btrfly12 RT @carlyflumer: T2: T2: @power4patients, @LacunaLoft, @ElephantsTea, @teaminspire, @_OurOdyssey_. #patientchat |
| Carly Flumer (she/her) @carlyflumer @ohhiialexa Yep! Saw that! I yelled at my monitor, “You’re not real!!” #patientchat |
| Grumpy Pug (Kate)💜 @GrumpyPug17 A1: As someone with #celiac who reacts to oat, I am scared to eat out. This impacts my job and social life. Even celiac-friendly kitchens use oat. Gluten sensors do not detect oat. I do not travel for work or eat out for pleasure, even at friends homes. |
| Alexa Jett 🦋 @ohhiialexa @cancergirl730 https://t.co/PlMK3ehkXo |
| NORD @RareDiseases @MaryOCMack What platform do you find most helpful for staying connected? #patientchat |
| Patient Empowerment Network @power4patients @patientchat Did you know that #patientchat has a companion Facebook group? It's a safe, secure and welcoming place to stay connected between patientchats. We would love for you to join us! https://t.co/9VUoKKYw6R |
| Laurie Reed @LReedptadvocate @patientchat T3: Feedback from patients suggests that sometimes it may be people not known previously - i.e. friends and family are not always the best support OR they're great support but sometimes it's helpful to talk with someone who really understands - a patient peer. #patientchat |
| NORD @RareDiseases T4: You don’t have to share anything about your #raredisease that you don’t want to. Start with what it is called and provide somewhereto find more information - like the NORD Rare Disease Database: https://t.co/gnmVYawsqp #patientchat #endingisolation |
| Ody @OdyO11 @patientchat T1: Being home-bound because of symptoms and of immune system abnormalities. Fluctuating symptoms that make it difficult to plan. Policies that don't include chronically ill disabled people. Access barriers to diagnosis, care and management options. Disbelief. #patientchat |
| Patient Chat @patientchat Topic 4 (T4:) coming up... #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: Who do you reach out to when you need to connect? #patientchat https://t.co/5Bn7fsW8Rj |
| Christina Lizaso @btrfly12 @carlyflumer It is a doctor I respect and that makes it hard. #patientchat |
| Christina Lizaso @btrfly12 RT @patientchat: T3: T3: Who do you reach out to when you need to connect? #patientchat https://t.co/5Bn7fsW8Rj |
| Patient Chat @patientchat T4: What tips or advice would you give to someone on how to introduce themselves and their disease? #patientchat https://t.co/WDjbgLAFRu |
 | Janet Kennedy @GetSocialHealth I imagine that #COVID19 took a lot of people by surprise and many didn't realize the extent of their isolation until they were in full lock-down. It must be very hard on people who didn't have an online community already established. #PatientChat |
| Patient Chat @patientchat #patientchat |
| Grumpy Pug (Kate)💜 @GrumpyPug17 T2: As someone with multiple overlapping chronic conditions, I connect with many communities. #MigraineChat and #NEISvoid are useful on Twitter and Beyond Celiac has been great as well. #PatientChat |
| Christina Lizaso @btrfly12 I think you have to be a lot more intentional about connecting during these times. There is less chance connections so you have to make it a priority. Easier said than done for us super introverts. #patientchat |
| Christina Lizaso @btrfly12 RT @LReedsbooks: @patientchat T1: @patientchat T1: Based on interviews with patients - Lack of knowledge of what resources might be available, fear of reaching out or possible rejection, feeling as if illness situation is unique and no one will understand. #patientchat |
| Christina Lizaso @btrfly12 RT @beth_morton: A2. There are some really well-moderated, supportive groups for people w/migraine. The #migraine community has a strong presence on Twitter, Facebook, and Instagram. I’m also reallly grateful that @miles4migraine has online support groups that meet regularly. #patientchat |
| Patient Chat @patientchat @GrumpyPug17 Hi! Be sure to include the hashtag #patientchat in all your tweets so everyone can view your responses :) |
| NORD @RareDiseases T4: Sometimes explaining your #raredisease is easier done with visuals. Check out how some people tell their stories and other resources for sharing rare disease facts in the NORD Video Library: https://t.co/LOKeUhd8nj #patientchat #endingisolation |
| Patient Empowerment Network @power4patients @patientchat Our #PENPowered Activity Guides have some great tips & ideas to help you stay connected and feel less isolated during #COVID19 or at anytime during your journey. Check them out and please share with your friends & family #patientchat https://t.co/8F5MieEIfh |
| Christina Lizaso @btrfly12 RT @LReedsbooks: @patientchat T3: @patientchat T3: Feedback from patients suggests that sometimes it may be people not known previously - i.e. friends and family are not always the best support OR they're great support but sometimes it's helpful to talk with someone who really understands - a patient peer. #patientchat |
| Carly Flumer (she/her) @carlyflumer T4: Share what YOU want, meaning whatever you’re comfortable with. Look at how others have introduced themselves, such as mentioning your disease, how long you’ve had it, how it’s affected your life, etc. There is NO wrong way to do it! #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T4: T4: What tips or advice would you give to someone on how to introduce themselves and their disease? #patientchat https://t.co/WDjbgLAFRu |
| Alexa Jett 🦋 @ohhiialexa T4: I’m sure every mother would like if they could, but BE YOURSELF! You have something to add to a community. At our @ElephantsTea happy hour, we have a mix of loud, quiet, happy, snarky, silly, serious and it just works. You belong! #patientchat |
| Spencer Health Solutions @spencerhealth As with any social channels, take the time to watch, listen, and observe. Make sure you know the rules of the group and share in a way that you are comfortable sharing. Most groups know and expect "lurking" so don't be in a rush. #PatientChat |
| Christina Lizaso @btrfly12 RT @patientchat: T4: T4: What tips or advice would you give to someone on how to introduce themselves and their disease? #patientchat https://t.co/WDjbgLAFRu |
| Ody @OdyO11 @patientchat On Twitter, I appreciate the #NEISvoid. https://t.co/jXD3e4x0MU #patientchat |
| Seth Rotberg @Srotberg15 @carlyflumer @tunaturns Appreciate you, my friend!❤️ #patientchat |
| Christina Lizaso @btrfly12 RT @RareDiseases: T4: T4: Sometimes explaining your #raredisease is easier done with visuals. Check out how some people tell their stories and other resources for sharing rare disease facts in the NORD Video Library: https://t.co/LOKeUhd8nj #patientchat #endingisolation |
 | Elephants and Tea @ElephantsTea RT @ohhiialexa: T2: T2: @LacunaLoft is a safe place for me. I was in an eye patch for 2 weeks recently, and they were the first group who saw me in it. I felt so much better for the remaining patch time! @DansHouseOfHope + @ElephantsTea are family for life too ❤️ #patientchat |
| Christina Lizaso @btrfly12 RT @carlyflumer: T4: T4: Share what YOU want, meaning whatever you’re comfortable with. Look at how others have introduced themselves, such as mentioning your disease, how long you’ve had it, how it’s affected your life, etc. There is NO wrong way to do it! #patientchat |
| NORD @RareDiseases T5: Take care of yourself, limit sources of anxiety and be mindful of how you’re feeling. Find more #mentalhealth coping strategies: https://t.co/CO9jcov6Jw #patientchat #endingisolation |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz A2: Mostly just Twitter in general. There's always something good to read. Through @statnews @RareRevolutionM @TheMightySite @TIME @wizardingworld, etc. @_OurOdyssey_ has great virtual meetups for young adults. #patientchat |
| Patient Chat @patientchat Topic 5 (T5:) coming up... #patientchat |
| Christina Lizaso @btrfly12 RT @spencerhealth: As with any social channels, take the time to watch, listen, and observe. Make sure you know the rules of the group and share in a way that you are comfortable sharing. Most groups know and expect "lurking" so don't be in a rush. #PatientChat |
| Beth Morton @beth_morton A4. I’m pretty big on reducing #migraine stigma, so my approach is to be direct. Explain how it affects all my senses. Explain that it affects all aspects of my life, but that I have a life in addition to my disease. #PatientChat |
| Beth Morton @beth_morton A4. Cont. I also tend to offer facts and research so it’s clear how serious #migraine can be and the continuum on which it can be experienced. I get that not everyone is comfortable being that direct, though. #PatientChat |
| Christina Lizaso @btrfly12 @OdyO11 @patientchat love, love this community commitment from #NEISvoid #patientchat |
| Patient Chat @patientchat T5: What’s the best advice you’ve ever been given to push yourself past feelings of isolation? #patientchat https://t.co/B28qjLBlZx |
| Christina Lizaso @btrfly12 RT @beth_morton: A4. I’m pretty big on reducing #migraine stigma, so my approach is to be direct. Explain how it affects all my senses. Explain that it affects all aspects of my life, but that I have a life in addition to my disease. #PatientChat |
| Seth Rotberg @Srotberg15 @ohhiialexa @LacunaLoft @DansHouseofHope @ElephantsTea I’ve heard some great things about @LacunaLoft so I’m glad they have helped you out! #patientchat |
| Alexa Jett 🦋 @ohhiialexa T5: Take the leap, if it’s not for you, move on. But community is worth the effort and risk. I had my first scan last December with my community behind you, and it’s a wonderful thing! ❤️ #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: What’s the best advice you’ve ever been given to push yourself past feelings of isolation? #patientchat https://t.co/B28qjLBlZx |
| Ody @OdyO11 @btrfly12 @patientchat The #NEISvoid is a wonderful community. I'm so thankful to @bennessb for creating this space! #patientchat |
| Laurie Reed @LReedptadvocate @patientchat T4: When I was diagnosed with MS, it was very important to me not to be defined by my disease. I realize this approach is not necessarily the choice for many and also I have few complications. I believe though there is a fundatmental desire to be 'seen' as 'you' - #patientchat |
| Patient Empowerment Network @power4patients RT @spencerhealth: As with any social channels, take the time to watch, listen, and observe. Make sure you know the rules of the group and share in a way that you are comfortable sharing. Most groups know and expect "lurking" so don't be in a rush. #PatientChat |
| Christina Lizaso @btrfly12 #patientchat |
| NORD @RareDiseases T5: Practice mindfulness whenever possible. Not sure where to start? Check out this guide of 12 simple ways to incorporate mindfulness: https://t.co/9h6QAfmYhq #patientchat #endingisolation |
| Seth Rotberg @Srotberg15 @BrettChinnLLC @_OurOdyssey_ @patientchat So glad to have you involved with Our Odyssey as a Board Member! #patientchat |
| Alexa Jett 🦋 @ohhiialexa @Srotberg15 @LacunaLoft @DansHouseofHope @ElephantsTea Great org, great people, great community! @LacunaLoft is incredible. #patientchat |
| Patient Empowerment Network @power4patients RT @LReedsbooks: @patientchat T4: @patientchat T4: When I was diagnosed with MS, it was very important to me not to be defined by my disease. I realize this approach is not necessarily the choice for many and also I have few complications. I believe though there is a fundatmental desire to be 'seen' as 'you' - #patientchat |
| Alexa Jett 🦋 @ohhiialexa RT @LReedsbooks: @patientchat T4: @patientchat T4: When I was diagnosed with MS, it was very important to me not to be defined by my disease. I realize this approach is not necessarily the choice for many and also I have few complications. I believe though there is a fundatmental desire to be 'seen' as 'you' - #patientchat |
| Christina Lizaso @btrfly12 RT @ohhiialexa: T5: T5: Take the leap, if it’s not for you, move on. But community is worth the effort and risk. I had my first scan last December with my community behind you, and it’s a wonderful thing! ❤️ #patientchat |
| Seth Rotberg @Srotberg15 RT @spencerhealth: As with any social channels, take the time to watch, listen, and observe. Make sure you know the rules of the group and share in a way that you are comfortable sharing. Most groups know and expect "lurking" so don't be in a rush. #PatientChat |
| Christina Lizaso @btrfly12 RT @LReedsbooks: @patientchat T4: @patientchat T4: When I was diagnosed with MS, it was very important to me not to be defined by my disease. I realize this approach is not necessarily the choice for many and also I have few complications. I believe though there is a fundatmental desire to be 'seen' as 'you' - #patientchat |
| Janet Kennedy @GetSocialHealth Learn to take it easy on yourself. Self-love and self-care are important. #PatientChat |
| Patient Empowerment Network @power4patients RT @GetSocialHealth: Learn to take it easy on yourself. Self-love and self-care are important. #PatientChat |
| Seth Rotberg @Srotberg15 RT @RareDiseases: T5: T5: Take care of yourself, limit sources of anxiety and be mindful of how you’re feeling. Find more #mentalhealth coping strategies: https://t.co/CO9jcov6Jw #patientchat #endingisolation |
| Patient Chat @patientchat Topic 6 (T6:) coming up... #patientchat |
| Seth Rotberg @Srotberg15 RT @LifeAccrdingLiz: A2: A2: Mostly just Twitter in general. There's always something good to read. Through @statnews @RareRevolutionM @TheMightySite @TIME @wizardingworld, etc. @_OurOdyssey_ has great virtual meetups for young adults. #patientchat |
| NORD @RareDiseases T6: When setting goals, start small! By accomplishing several small goals, you will get the ball moving and bigger goals won’t seem as difficult. #patientchat #endingisolation |
| Patient Chat @patientchat T6: What goals would you set for someone looking to overcome isolation? #patientchat https://t.co/IPGivPJu7n |
| Alexa Jett 🦋 @ohhiialexa T6: Find at least one good friend who you can be totally honest with when it comes to health. Be sure to have fun also! Join community crafts, games, and yoga is a wonderful supportive tool as well, not just traditional support groups! #patientchat |
| Seth Rotberg @Srotberg15 https://t.co/2BM54I1plC |
| Patient Empowerment Network @power4patients RT @patientchat: T6: T6: What goals would you set for someone looking to overcome isolation? #patientchat https://t.co/IPGivPJu7n |
| Christina Lizaso @btrfly12 RT @ohhiialexa: T6: T6: Find at least one good friend who you can be totally honest with when it comes to health. Be sure to have fun also! Join community crafts, games, and yoga is a wonderful supportive tool as well, not just traditional support groups! #patientchat |
| Seth Rotberg @Srotberg15 RT @RareDiseases: T6: T6: When setting goals, start small! By accomplishing several small goals, you will get the ball moving and bigger goals won’t seem as difficult. #patientchat #endingisolation |
| NORD @RareDiseases T6: Make sure you are setting #goals for yourself that you can control and achieve. Read more strategies for #coping w/ additional resources: https://t.co/yY2GrYF92t #patientchat #endingisolation |
| Beth Morton @beth_morton A5. For me, it’s easy to make my world small to avoid what I think are triggers. That led to isolation. It helped to be told to think of small ways to make my world bigger. For me, it’s not being afraid to test triggers or push a boundary a little to gain confidence. #PatientChat |
| Spencer Health Solutions @spencerhealth Start with one. One person, one friend, one community. Find an advocate/partner/place to be and grow from there. #PatientChat |
| Carly Flumer (she/her) @carlyflumer T6: Reach out to one close friend. See how they react. Allow them to listen to your story and what you’re feeling. Tell them about your emotional/physical/mental needs. Be yourself. ❤️ #patientchat |
| Alexa Jett 🦋 @ohhiialexa @RareDiseases Crafting can also help patients express feelings without talking per-se. Art therapy is a valid tool that needs to become common place. #patientchat |
| Patient Empowerment Network @power4patients RT @spencerhealth: Start with one. One person, one friend, one community. Find an advocate/partner/place to be and grow from there. #PatientChat |
| Laurie Reed @LReedptadvocate @patientchat T5: Again, from patients' experiences - learning how to accept help from others - people wouldn't offer if they didn't genuinely want to help. And finding ways to 'help' those who offer support - provide options for ways to help so people can choose ways to help. #patientchat |
| Christina Lizaso @btrfly12 @ohhiialexa There are so many opportunities to connect outside of your condition around something of interest or to volunteer - for your condition or something else entirely. Support and connection are bigger than what many people first think of which is a "support group". #patientchat |
| NORD @RareDiseases T6: Overcome isolation by connecting w/ one person a day. Isolation can make you feel like you’re all alone - but if you reach out and share your concerns, you’d be surprised how many people will be able to relate. #patientchat #endingisolation |
| Jeff Dubin @Power2Patient T6: Separate out the friends who are "lost causes" because they are too selfish and self-involved vs. those who just need to be educated. And then just focus on the latter as well as make new friends. #patientchat |
| Patient Empowerment Network @power4patients RT @btrfly12: @ohhiialexa There are so many opportunities to connect outside of your condition around something of interest or to volunteer - for your condition or something else entirely. Support and connection are bigger than what many people first think of which is a "support group". #patientchat |
| Alexa Jett 🦋 @ohhiialexa RT @btrfly12: @ohhiialexa There are so many opportunities to connect outside of your condition around something of interest or to volunteer - for your condition or something else entirely. Support and connection are bigger than what many people first think of which is a "support group". #patientchat |
| Christina Lizaso @btrfly12 RT @beth_morton: A5. For me, it’s easy to make my world small to avoid what I think are triggers. That led to isolation. It helped to be told to think of small ways to make my world bigger. For me, it’s not being afraid to test triggers or push a boundary a little to gain confidence. #PatientChat |
| Patient Chat @patientchat Last topic (T7:) coming up... #patientchat |
| Christina Lizaso @btrfly12 RT @spencerhealth: Start with one. One person, one friend, one community. Find an advocate/partner/place to be and grow from there. #PatientChat |
| Janet Kennedy @GetSocialHealth RT @RareDiseases: T6: T6: Overcome isolation by connecting w/ one person a day. Isolation can make you feel like you’re all alone - but if you reach out and share your concerns, you’d be surprised how many people will be able to relate. #patientchat #endingisolation |
| Christina Lizaso @btrfly12 RT @ohhiialexa: @RareDiseases Crafting can also help patients express feelings without talking per-se. Art therapy is a valid tool that needs to become common place. #patientchat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz A3: Pretty much everyone. I don't think anyone enjoys all these #COVID19 induced restrictions. THAT's something we agree on. The degree it impacts us certainly varies. #patientchat |
| NORD @RareDiseases @LaurenCTesta Hey Lauren! Thanks for joining the #patientchat! We're happy to have you with us. |
 | TheMeaningofPain @tmopain RT @RareDiseases: T6: T6: Overcome isolation by connecting w/ one person a day. Isolation can make you feel like you’re all alone - but if you reach out and share your concerns, you’d be surprised how many people will be able to relate. #patientchat #endingisolation |
| Alexa Jett 🦋 @ohhiialexa @btrfly12 Absolutely agree with this! Community isn’t just a typical “support group”. It’s okay if patients don’t connect in that way, find other means of connections. #patientchat |
| Carly Flumer (she/her) @carlyflumer @ohhiialexa @RareDiseases I would say the same for writing/journaling! #patientchat |
| Christina Lizaso @btrfly12 RT @RareDiseases: T6: T6: Overcome isolation by connecting w/ one person a day. Isolation can make you feel like you’re all alone - but if you reach out and share your concerns, you’d be surprised how many people will be able to relate. #patientchat #endingisolation |
| Seth Rotberg @Srotberg15 RT @carlyflumer: T6: T6: Reach out to one close friend. See how they react. Allow them to listen to your story and what you’re feeling. Tell them about your emotional/physical/mental needs. Be yourself. ❤️ #patientchat |
| Patient Chat @patientchat T7: How did you find a patient organization group? What hashtag do they use? #patientchat https://t.co/4hRb202QAX |
| Alexa Jett 🦋 @ohhiialexa @carlyflumer @RareDiseases Yes!! Writing is therapy! #patientchat |
| Christina Lizaso @btrfly12 RT @ohhiialexa: @btrfly12 Absolutely agree with this! Community isn’t just a typical “support group”. It’s okay if patients don’t connect in that way, find other means of connections. #patientchat |
| Christina Lizaso @btrfly12 RT @carlyflumer: @ohhiialexa @RareDiseases I would say the same for writing/journaling! #patientchat |
| NORD @RareDiseases T7: Social networks have made finding a patient group much easier over the years. Try searching for other people with the same diagnosis or related stories by searching your #raredisease hashtag on Twitter and Facebook. #patientchat #endingisolation |
| Alexa Jett 🦋 @ohhiialexa T7: Thyroid Cancer = #ThyCaTalk by @ThyCaInc. AYA Cancer = #AYACSM typically lead by @EK_Drake. And #patientchat for all! 😉 |
| Laurie Reed @LReedptadvocate @patientchat T6: Start small, be forgiving of yourself and others, understand the risk is worth the reward, and remember it may take some time but small steps will get you there sooner than not starting at all. #patientchat |
| Carly Flumer (she/her) @carlyflumer @LReedsbooks @patientchat Yes to all of this! I often have a difficult time to accept help because I feel like a burden. #patientchat |
| Heather McCullen @H_SalemOaks T6: Don't worry about what you think you SHOULD be doing. Some people like a lot of friends, some people only need 1, some people are fine sending messages into the twitter void. Make goals that make you FEEL less isolated, not that make you appear less isolated. #patientchat |
| NORD @RareDiseases RT @LReedsbooks: @patientchat T6: @patientchat T6: Start small, be forgiving of yourself and others, understand the risk is worth the reward, and remember it may take some time but small steps will get you there sooner than not starting at all. #patientchat |
 | Kelly Anderson @kelly_archives To start, take this well-being quiz to learn which self-care strategies may be especially helpful for you. #patientchat |
| Christina Lizaso @btrfly12 Here's info on some of the active cancer hashtags with some general health ones thrown in. https://t.co/Kgo3sDB81N #patientchat |
| NORD @RareDiseases T7: Not sure where to start? Be sure to check out the NORD patient organization database here: https://t.co/1wywV04SrE #patientchat #endingisolation |
| NORD @RareDiseases RT @kelly_archives: To start, take this well-being quiz to learn which self-care strategies may be especially helpful for you. #patientchat |
 | RARE’ingToGo 🧡🦓💚 @Dphillips2112 RT @RareDiseases: Hello from NORD, the leading patient advocacy organization dedicated to patients with #rarediseases & the orgs. that serve them. Today we’re participating in a #patientchat tweetchat about #endingisolation. Follow along! |
| Alexa Jett 🦋 @ohhiialexa RT @btrfly12: Here's info on some of the active cancer hashtags with some general health ones thrown in. https://t.co/Kgo3sDB81N #patientchat |
| Christina Lizaso @btrfly12 RT @LReedsbooks: @patientchat T6: @patientchat T6: Start small, be forgiving of yourself and others, understand the risk is worth the reward, and remember it may take some time but small steps will get you there sooner than not starting at all. #patientchat |
| Alexa Jett 🦋 @ohhiialexa RT @RareDiseases: T7: Not sure where to start? Be sure to check out the NORD patient organization database here: T7: Not sure where to start? Be sure to check out the NORD patient organization database here: https://t.co/1wywV04SrE #patientchat #endingisolation |
| Christina Lizaso @btrfly12 RT @H_SalemOaks: T6: T6: Don't worry about what you think you SHOULD be doing. Some people like a lot of friends, some people only need 1, some people are fine sending messages into the twitter void. Make goals that make you FEEL less isolated, not that make you appear less isolated. #patientchat |
| Christina Lizaso @btrfly12 RT @RareDiseases: T7: Not sure where to start? Be sure to check out the NORD patient organization database here: T7: Not sure where to start? Be sure to check out the NORD patient organization database here: https://t.co/1wywV04SrE #patientchat #endingisolation |
| Spencer Health Solutions @spencerhealth #patientchat participants are super savvy about social media however, check to make sure that your favorite health hashtag is registered with https://t.co/iv7WuvNKO4 (it's free!). It will make it easier for new folks to find you and the analytics are awesome. @healthhashtags |
 | Douglas Michael Massing 🌈 ...but what do I know? @T2DRemission I think I connected with #HCSM (the late, lamented Healthcare Communications and Social Media) and #DSMA (Diabetes Social Media Advocacy) in 2013, probably through serendipity, which continues to serve me well. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T7: T7: How did you find a patient organization group? What hashtag do they use? #patientchat https://t.co/4hRb202QAX |
| Alexa Jett 🦋 @ohhiialexa RT @spencerhealth: #patientchat participants are super savvy about social media however, check to make sure that your favorite health hashtag is registered with https://t.co/iv7WuvNKO4 (it's free!). It will make it easier for new folks to find you and the analytics are awesome. @healthhashtags |
| 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 |
| Seth Rotberg @Srotberg15 @RareDiseases @BrettChinnLLC @patientchat @_OurOdyssey_ The power of connection goes such a long way! #patientchat |
| Heather McCullen @H_SalemOaks T7: I followed strangers and friends of strangers, and talked to strangers until I built a timeline that feels like a group. Don't be afraid to be awkward on Twitter, it's way more open to strangers communicating than facebook is. #patientchat |
| Christina Lizaso @btrfly12 @T2DRemission My fav of the late, lamented chats was #hcsmca - Canada-based but amazing topics and very community minded. #patientchat |
| Janet Kennedy @GetSocialHealth Getting analytics are important if you are seeking sponsorship for your network or event as well. #PatientChat |
| Patient Empowerment Network @power4patients @patientchat Feeling isolated and looking for a patient organization to join but you don't know where to start? The fab @carlyflumer has some ideas for you #patientchat https://t.co/WE38jtvLJq |
| Alexa Jett 🦋 @ohhiialexa CT: No one is immune to isolation. And in a time where we are *physically* isolating, we must make sure we aren’t experiencing social isolation. Many ways to combat it, not just support groups! We all need love, support, and to be understood. #patientchat |
| Patient Empowerment Network @power4patients RT @Srotberg15: @RareDiseases @BrettChinnLLC @patientchat @_OurOdyssey_ The power of connection goes such a long way! #patientchat |
| Christina Lizaso @btrfly12 CT: I feel less isolated and better because of today's #patientchat Thanks all! |
| Patient Empowerment Network @power4patients RT @spencerhealth: #patientchat participants are super savvy about social media however, check to make sure that your favorite health hashtag is registered with https://t.co/iv7WuvNKO4 (it's free!). It will make it easier for new folks to find you and the analytics are awesome. @healthhashtags |
| Christina Lizaso @btrfly12 RT @ohhiialexa: CT: CT: No one is immune to isolation. And in a time where we are *physically* isolating, we must make sure we aren’t experiencing social isolation. Many ways to combat it, not just support groups! We all need love, support, and to be understood. #patientchat |
| Patient Empowerment Network @power4patients RT @btrfly12: CT: CT: I feel less isolated and better because of today's #patientchat Thanks all! |
| Patient Empowerment Network @power4patients RT @ohhiialexa: CT: CT: No one is immune to isolation. And in a time where we are *physically* isolating, we must make sure we aren’t experiencing social isolation. Many ways to combat it, not just support groups! We all need love, support, and to be understood. #patientchat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz A4: Balance it out by sharing something they enjoy, or another detail. It can be awkward the first time though. For some, they might just feel OK with I'm so-and-so, from wherever, and however old. #patientchat |
 | Mary MACK @MaryOCMack CT We need treatments for rare diseases; they need to be affordable. No more pricing people out. An excellent profit can still be made. Many with LMNA mutations and other rare diseases have metabolic issues. Rely on analog insulin. drugs need to very affordable #patientchat |
| NORD @RareDiseases RT @ohhiialexa: CT: CT: No one is immune to isolation. And in a time where we are *physically* isolating, we must make sure we aren’t experiencing social isolation. Many ways to combat it, not just support groups! We all need love, support, and to be understood. #patientchat |
 | Brandon Hudgins @bhudgruns RT @RareDiseases: Hello from NORD, the leading patient advocacy organization dedicated to patients with #rarediseases & the orgs. that serve them. Today we’re participating in a #patientchat tweetchat about #endingisolation. Follow along! |
 | Sarah Clark @SarahClarkBDM RT @kelly_archives: To start, take this well-being quiz to learn which self-care strategies may be especially helpful for you. #patientchat |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| Patient Chat @patientchat Thanks so much @RareDiseases for sharing your insights and being our special guest for today’s #patientchat |
| Grumpy Pug (Kate)💜 @GrumpyPug17 T7: I stumbled upon Twitter patient groups bc mutuals were connected with my Science Twitter account. For chronic migraine, #migrainechat. For everything else, #neisvoid I’ve yet to find a good celiac-specific Twitter group. Recommendations welcome. #patientchat |
| Patient Chat @patientchat Be sure to check out @RareDiseases Living Rare, Living Stronger™ NORD® Patient and Family Forum (July 18-19), a two-day virtual conference filled with learning, connecting and fun https://t.co/ngYK4oi9zO #patientchat |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour |
| Patient Chat @patientchat Reminder: We are on our summer schedule so we will be back on July 10th for the next Empowered #patientchat. Hope to see you there! https://t.co/qggZje90tQ |
| Christina Lizaso @btrfly12 RT @Rose_of_Sharon8: |
| Janet Kennedy @GetSocialHealth Off topic #PatientChat but can you help me? I'm connected to a #clinicaltrials #PatientRecruitment company that specializes in finding #POC. I can't remember their name. Do you? |
| NORD @RareDiseases Thank you @patientchat & thanks for all who joined us for this #patientchat. We look forward to connecting w/ you online soon for the #LivingRareForum where we will be hosting a workshop on the same topic. Find out more: https://t.co/1Gg1zrskeq Be safe & stay well! |
| Patient Chat @patientchat Keep the conversation going between chats with hashtag #patientchat |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz A5: "Aren'tcha sick of looking at the same four walls?" "It's such a nice day out!" #patientchat |
 | Diverse Health Hub @DHealthhub RT @carlyflumer: T6: T6: Reach out to one close friend. See how they react. Allow them to listen to your story and what you’re feeling. Tell them about your emotional/physical/mental needs. Be yourself. ❤️ #patientchat |
| Diverse Health Hub @DHealthhub RT @ohhiialexa: T5: T5: Take the leap, if it’s not for you, move on. But community is worth the effort and risk. I had my first scan last December with my community behind you, and it’s a wonderful thing! ❤️ #patientchat |
| Christina Lizaso @btrfly12 RT @RareDiseases: Thank you @patientchat & thanks for all who joined us for this #patientchat. We look forward to connecting w/ you online soon for the #LivingRareForum where we will be hosting a workshop on the same topic. Find out more: https://t.co/1Gg1zrskeq Be safe & stay well! |
| Laurie Reed @LReedptadvocate @patientchat CT: Recognizing the value of peer networking - Thank you #patientchat @RareDiseases @power4patients for hosting another great discussion. |
| Spencer Health Solutions @spencerhealth RT @GetSocialHealth: Off topic #PatientChat but can you help me? I'm connected to a #clinicaltrials #PatientRecruitment company that specializes in finding #POC. I can't remember their name. Do you? |
| Grumpy Pug (Kate)💜 @GrumpyPug17 RT @OdyO11: @btrfly12 @patientchat The #NEISvoid is a wonderful community. I'm so thankful to @bennessb for creating this space! #patientchat |
| Grumpy Pug (Kate)💜 @GrumpyPug17 Migraine sucks y’all. |
| Liz Kennerley (she/her) #COVIDIsntOver #PBMTReform @LifeAccrdingLiz @patientchat A6: Step outside every SINGLE day. Yes, even 11pm in your PJs counts. #patientchat |
#patientchat content from Twitter.