#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 |
 | AllStripes @_allstripes RT @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 @ZHeatherChamp Yes, just started! :) #patientchat |
 | Heather 🇺🇸 @ZHeatherChamp Hi #patientchat! Glad I’m around for a chat today! |
| Patient Chat @patientchat We start out with introductions - Those joining in, please take a moment to introduce yourself. #patientchat |
| Patient Chat @patientchat I’m Kara from @power4patients and I’m excited about today’s chat with @rdmd #patientchat |
 | Inspire @InspireIsHealth RT @KFS_Freedom: #patientchat begins NOW 12 noon CT! Don't miss it! With @rdmd & @patientchat @power4patients 🦓#RareDisease #RareDiseaseDay #patient #conversations #hcsm #voice #encouragement #empowerment @GlobalGenes @RareDiseases @ncats_nih_gov #NIHchat is next up @ 1pm CT, but first... |
 | Jennifer @Jeffner4118 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/lLrD3P2eUC https://t.co/LqN4eNPw07 |
| Patient Chat @patientchat We’re excited to have guest @rdmd here, whose mission is to empower patients and communities to accelerate the development of treatments for rare diseases of all kinds #patientchat |
 | Klippel-Feil Syndrome Freedom @KFS_Freedom Hi, I'll be on this handle and @Rose_of_Sharon8 today, excited to be a part of todays #patientchat |
 | Carly Flumer (she/her) @carlyflumer I’m Carly! I’m a zebra (rare disease) AND chronic patient. I got the best of both worlds. 😉 #patientchat |
 | Seth Rotberg @Srotberg15 @patientchat @power4patients @rdmd Hi Kara and crew! Always excited to participate in this #patientchat |
| Patient Chat @patientchat You can find out more about @rdmd and their work here: https://t.co/FZXXI3Wghh #patientchat |
| Inspire @InspireIsHealth Hello to the #patientchat community, John Novack from Inspire checking in, between meetings. |
| Jennifer @Jeffner4118 Hello. My name is Jennifer and I am a rare disease patient. #patientchat |
| AllStripes @_allstripes We’re excited to be hosting this #patientchat in honor of upcoming #RareDiseaseDay, which occurs every 4th year on the RARE day of Feb. 29! A #raredisease, by definition, affects fewer than 200K ppl in the U.S. But combined, rare diseases affect 300M ppl worldwide— not so rare! |
| Heather 🇺🇸 @ZHeatherChamp I’m Heather, person living with 2 rare diseases in 2011 finding I need an assistant to manage my life with both of them! #btsm #pten #patientchat |
| Patient Chat @patientchat Please continue intros and welcomes. I’ll share a couple “ground rules" :) #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @Jennife94898836 Me too! #patientchat |
| Seth Rotberg @Srotberg15 Hi everyone! I am the Patient Engagement Manager at @teaminspire who lives in the Boston area. You may also know me from the work I do with @_OurOdyssey_ to support young adults in the rare and chronic communities. #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 |
 | Diverse Health Hub @DHealthhub RT @patientchat: You can find out more about @rdmd and their work here: You can find out more about @rdmd and their work here: https://t.co/FZXXI3Wghh #patientchat |
| Klippel-Feil Syndrome Freedom @KFS_Freedom #patientchat is now, join us! @rdmd is today's special guest! #raredisease @patientchat |
 | Jeremy Murphy @jeremypmurphy RT @patientchat: Join/Share: "Driving Change: Join/Share: "Driving Change: How Rare Disease Patients Can Get Involved" Empowered #patientchat w/@rdmd Friday 2/21 1pmET #epatient #ptexp #s4pm #hcsm #hcsmca #hcldr #raredisease #RareDiseaseDay https://t.co/IvsgZaHfkW https://t.co/vNGfHL4YMP |
| Seth Rotberg @Srotberg15 @carlyflumer Hi Carly! Hope you are doing well my friend. #patientchat |
| Patient Chat @patientchat You can view our Chat Etiquette and Guidelines at https://t.co/fs20NR954d #patientchat |
| Patient Chat @patientchat Today's #patientchat topic is Driving Change: How Rare Disease Patients Can Get Involved https://t.co/lLrD3P2eUC |
 | Alan Brewington @abrewi3010 Alan here. Although I have several common arthritis illnesses, they were caused by falling off a cliff rock climbing. #patientchat |
| 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 |
| Carly Flumer (she/her) @carlyflumer @Srotberg15 Hi Seth! Same to you! #tribelife #patientchat |
| AllStripes @_allstripes RT @patientchat: Today's #patientchat topic is Driving Change: Today's #patientchat topic is Driving Change: How Rare Disease Patients Can Get Involved https://t.co/lLrD3P2eUC |
| Patient Chat @patientchat Time to start our topics. Here comes T1: #patientchat |
 | laminopathies support group @laminopathies Hi I’m Mary, just joining. #patientchat |
| Seth Rotberg @Srotberg15 RT @patientchat: Today's #patientchat topic is Driving Change: Today's #patientchat topic is Driving Change: How Rare Disease Patients Can Get Involved https://t.co/lLrD3P2eUC |
| Heather 🇺🇸 @ZHeatherChamp @patientchat Love this! #patientchat |
| Patient Chat @patientchat T1: How are you planning to get involved and/or support #RareDiseaseDay? #patientchat https://t.co/WgwlPz1rd9 |
 | Our Odyssey @_OurOdyssey_ RT @Srotberg15: Hi everyone! I am the Patient Engagement Manager at @teaminspire who lives in the Boston area. You may also know me from the work I do with @_OurOdyssey_ to support young adults in the rare and chronic communities. #patientchat |
 | Patient Empowerment Network @power4patients RT @patientchat: T1: T1: How are you planning to get involved and/or support #RareDiseaseDay? #patientchat https://t.co/WgwlPz1rd9 |
 | Jeff Dubin @Power2Patient @patientchat Hi, I'm Jeff at @Power2Patient. Continuing the diagnostic odyssey to figure out which zebra(s) are afflicting my wife. #patientchat |
 | Sandra Woods, CIPP/C; she/her @SandraWoodsMtl Hi #patientchat! Joining in from sunny but cold & snowy Montréal⛄ My background is in bioethics, and I've been a rare disease patient -with CRPS - since 2016 Since then, I've become active in disease awareness & patient advocacy activities https://t.co/Xh20qH93ce |
| Heather 🇺🇸 @ZHeatherChamp @rdmd Thank you! #patientchat |
| AllStripes @_allstripes A1 This #RareDiseaseDay, we’re honoring the strength and passion of the #raredisease community. All next week we'll share the personal stories that motivate RDMD staff to keep pushing for a better future for rare disease patients and families. Follow us join in! #patientchat |
 | Lisa Davis Budzinski @lisadbudzinski RT @patientchat: Today's #patientchat topic is Driving Change: Today's #patientchat topic is Driving Change: How Rare Disease Patients Can Get Involved https://t.co/lLrD3P2eUC |
| Patient Empowerment Network @power4patients RT @rdmd: A1 This #RareDiseaseDay, we’re honoring the strength and passion of the #raredisease community. All next week we'll share the personal stories that motivate RDMD staff to keep pushing for a better future for rare disease patients and families. Follow us join in! #patientchat |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @ZHeatherChamp Oh wow, one rare disease is difficult enough - I can't imagine two! #patientchat |
| Carly Flumer (she/her) @carlyflumer @patientchat Wearing stripes! Also, I believe on the museums in DC is hosting an event, so that’s close to home for me! #patientchat |
| Alan Brewington @abrewi3010 A1 look for new ways to be a friend and supporter for those with rare diseases. Let’s break silos in order to help. #patientchat |
 | VCVaile @VCVaile #whatmakesmerarePH |
| Klippel-Feil Syndrome Freedom @KFS_Freedom T1: @patientchat @rdmd we're encouraging our community and the rare disease community to 'show their stripes' in quick videos sharing their lives, needs, dreams. Rare Disease Day is Feb 29th 🗝💪🦓! #patientchat Anyone may get involved here > https://t.co/0BTubLjJcL. |
| Heather 🇺🇸 @ZHeatherChamp A1: I have my blog which I’ll write on, and have a few denim ribbon pins from @GlobalGenes I plan to give to friends/medical staff. #patientchat #pten #RareDisease |
 | USP7 @FoundationUSP7 RT @Srotberg15: Hi everyone! I am the Patient Engagement Manager at @teaminspire who lives in the Boston area. You may also know me from the work I do with @_OurOdyssey_ to support young adults in the rare and chronic communities. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @carlyflumer @patientchat Ooooh! What kind of event? #patientchat |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T1 #patientchat I'm supporting #RareDiseaseDay here, then at 1400 on @NIH #RDDNIH chat, and by viewing a NIH full-day #raredisease webcast Feb 28 ↔️ https://t.co/ghaXiuuINw 🤗 Also creating #CRPS messaging for social media, with my own pics, like this one = Stay tuned for more! https://t.co/vLPMHMCsaL |
| Inspire @InspireIsHealth RT @KFS_Freedom: T1: T1: @patientchat @rdmd we're encouraging our community and the rare disease community to 'show their stripes' in quick videos sharing their lives, needs, dreams. Rare Disease Day is Feb 29th 🗝💪🦓! #patientchat Anyone may get involved here > https://t.co/0BTubLjJcL. |
| AllStripes @_allstripes RT @KFS_Freedom: T1: T1: @patientchat @rdmd we're encouraging our community and the rare disease community to 'show their stripes' in quick videos sharing their lives, needs, dreams. Rare Disease Day is Feb 29th 🗝💪🦓! #patientchat Anyone may get involved here > https://t.co/0BTubLjJcL. |
| Heather 🇺🇸 @ZHeatherChamp @SandraWoodsMtl It’s a full-time job and then some! #patientchat |
| Carly Flumer (she/her) @carlyflumer @ZHeatherChamp @patientchat I can’t remember to be honest, but it’s on @RareDiseases’s website. #patientchat |
| AllStripes @_allstripes RT @ZHeatherChamp: A1: A1: I have my blog which I’ll write on, and have a few denim ribbon pins from @GlobalGenes I plan to give to friends/medical staff. #patientchat #pten #RareDisease |
| AllStripes @_allstripes Yesss! 🙌 |
| Heather 🇺🇸 @ZHeatherChamp @Jennife94898836 @patientchat Where did you get your shirt from? I need an updated one myself! #patientchat #RareDisease |
| Heather 🇺🇸 @ZHeatherChamp @carlyflumer @patientchat @RareDiseases 👍🏻👍🏻 #patientchat |
| laminopathies support group @laminopathies T1. My main focus to support rare disease patients is to continue to spotlight the truth that treatments must be affordable/accessible. Too much of the time patients are priced out of that which they helped bring to fruition. #patientchat |
| Patient Chat @patientchat #patientchat |
| Seth Rotberg @Srotberg15 A1: I wish I could be in DC next week during Rare Disease Week but I will be speaking at @MassBio’s Rare Disease Day event with other awesome young adults like @Chris_Anselmo @LexiPappas_ #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @laminopathies I wish mine HAD a treatment! #patientchat #pten |
 | 12Alice Lee @PepperPell #CureHD #Jhdkids #huntingtonsdisease #blueandpurple #wehaveaface #HDresearchselfie |
| 12Alice Lee @PepperPell RT @KFS_Freedom: T1: T1: @patientchat @rdmd we're encouraging our community and the rare disease community to 'show their stripes' in quick videos sharing their lives, needs, dreams. Rare Disease Day is Feb 29th 🗝💪🦓! #patientchat Anyone may get involved here > https://t.co/0BTubLjJcL. |
| AllStripes @_allstripes RT @laminopathies: T1. My main focus to support rare disease patients is to continue to spotlight the truth that treatments must be affordable/accessible. Too much of the time patients are priced out of that which they helped bring to fruition. #patientchat |
| Heather 🇺🇸 @ZHeatherChamp @Rose_of_Sharon8 LOL ❤️ #patientchat |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T1 #patientchat And I'll be wearing my #RareDisease zebra combo!😁🦓 Paired with orange 'cause that's the colour of #CRPS 🔥 https://t.co/KSfk1FqcTH |
| Alan Brewington @abrewi3010 A1 just bc I don’t have a rate disease doesn’t mean I can’t be an advocate. I love the work/approach @EmilysEntourage & @project_sleep & @theproject3x5 does. We can all learn from them. #patientchat |
| Inspire @InspireIsHealth @patientchat T1: We're honored to be participating in #RareDiseaseDay events in NYC, Boston, and DC, with @Srotberg15 speaking at the @MassBio Boston forum Friday. #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: #patientchat |
| Patient Chat @patientchat Topic 2 (T2:) coming up... #patientchat |
| VCVaile @VCVaile Follow now! #RareDisease @PatientChat #whatmakesmerarePH |
| Seth Rotberg @Srotberg15 RT @laminopathies: T1. My main focus to support rare disease patients is to continue to spotlight the truth that treatments must be affordable/accessible. Too much of the time patients are priced out of that which they helped bring to fruition. #patientchat |
| 12Alice Lee @PepperPell #CureHD #Jhdkids #huntingtonsdisease #blueandpurple #wehaveaface #HDresearchselfie |
| 12Alice Lee @PepperPell RT @patientchat: Today's #patientchat topic is Driving Change: Today's #patientchat topic is Driving Change: How Rare Disease Patients Can Get Involved https://t.co/lLrD3P2eUC |
| 12Alice Lee @PepperPell #CureHD #Jhdkids #huntingtonsdisease #blueandpurple #wehaveaface #HDresearchselfie |
| 12Alice Lee @PepperPell RT @rdmd: We’re excited to be hosting this #patientchat in honor of upcoming #RareDiseaseDay, which occurs every 4th year on the RARE day of Feb. 29! A #raredisease, by definition, affects fewer than 200K ppl in the U.S. But combined, rare diseases affect 300M ppl worldwide— not so rare! |
| Seth Rotberg @Srotberg15 RT @teaminspire: @patientchat T1: @patientchat T1: We're honored to be participating in #RareDiseaseDay events in NYC, Boston, and DC, with @Srotberg15 speaking at the @MassBio Boston forum Friday. #patientchat |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @Rose_of_Sharon8 No such thing as oversharing when it comes to #raredisease info, right?! #patientchat |
| 12Alice Lee @PepperPell RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of interest to empowered patients |
| 12Alice Lee @PepperPell RT @patientchat: Here’s a handy article on participating in tweet chats: Here’s a handy article on participating in tweet chats: https://t.co/5JyoTGvZvH #patientchat |
| Patient Chat @patientchat T2: What are some ways rare disease patients or supporters can increase awareness for rare diseases every day? #patientchat https://t.co/2wFDCumflZ |
| AllStripes @_allstripes Okay, this is one of the best outfits we’ve seen! Go Sandra! 🦓 #rarestrong #patientchat |
| Patient Empowerment Network @power4patients @Srotberg15 @MassBio @Chris_Anselmo @LexiPappas_ The annual @MassBio Rare Disease Day event is amazing! They're lucky to have you as a speaker. #patientchat |
| Alan Brewington @abrewi3010 A1 @teaminspire is another great example of supporting and advocating for rare disease #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T2: T2: What are some ways rare disease patients or supporters can increase awareness for rare diseases every day? #patientchat https://t.co/2wFDCumflZ |
| 12Alice Lee @PepperPell RT @PepperPell: #CureHD #Jhdkids #huntingtonsdisease #blueandpurple #wehaveaface #HDresearchselfie |
| AllStripes @_allstripes A2 Share your story widely if you’re comfortable. When you’re authentic, people are eager to listen. Find creative ways to spread the word. We’ve seen the #IceBucketChallenge (#EndALS) and @CupidsUndieRun (#EndNF) bring tons of visibility & funding to hidden diseases #patientchat |
 | alsFIGHTeurope @alsfighteurope RT @rdmd: A2 Share your story widely if you’re comfortable. When you’re authentic, people are eager to listen. Find creative ways to spread the word. We’ve seen the #IceBucketChallenge (#EndALS) and @CupidsUndieRun (#EndNF) bring tons of visibility & funding to hidden diseases #patientchat |
| Patient Empowerment Network @power4patients A2: Check out @Rossco006's story and how he advocates for rare disease patients https://t.co/k1jRkCKczw #patientchat |
 | Vanessa Vaile @VanessaVaile RT @SandraWoodsMtl: T1 #patientchat I'm supporting #RareDiseaseDay here, then at 1400 on @NIH #RDDNIH chat, and by viewing a NIH full-day #raredisease webcast Feb 28 ↔️ https://t.co/ghaXiuuINw 🤗 Also creating #CRPS messaging for social media, with my own pics, like this one = Stay tuned for more! https://t.co/vLPMHMCsaL |
| Patient Chat @patientchat RT @rdmd: A2 Share your story widely if you’re comfortable. When you’re authentic, people are eager to listen. Find creative ways to spread the word. We’ve seen the #IceBucketChallenge (#EndALS) and @CupidsUndieRun (#EndNF) bring tons of visibility & funding to hidden diseases #patientchat |
 | Stephen Dolle @TheTrenches2024 @patientchat A few years ago I wrote a blog for hydrocephalus, and later converted it to "patient tools & apps" for affected patients & families. There was some confusion if hydrocephalus met the criteria for #RareDisease . Since then dev a rare type of autoimmune disorder #patientchat . |
| Carly Flumer (she/her) @carlyflumer @patientchat Engage with the community, and most importantly, EDUCATE! Not enough people know about #rare, and these diseases are vastly underrepresented in #clinicaltrials. #patientchat @NCICancerTrials |
| Jennifer @Jeffner4118 @ZHeatherChamp @patientchat I have ones that are specific to each of the rare diseases that I have.There is one from the FB group Superior Mesenteric Artery Syndrome Research Awareness and Support, with a zebra on it with several different color stripes and says “I’m a zebra, ask me why” #patientchat |
| 12Alice Lee @PepperPell #CureHD #Jhdkids #huntingtonsdisease #blueandpurple #wehaveaface #HDresearchselfie |
| 12Alice Lee @PepperPell RT @rdmd: Happening SOON! Join in with #patientchat to discuss #raredisease TODAY! |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T2 #patientchat My background's clinical research ethics, so I try to follow scientific news from a wide variety of sources & look for results that might someday be relevant to my #raredisease I post them with CRPS hashtag & other tags relevant to its researchers - and ask Qs |
| Seth Rotberg @Srotberg15 RT @rdmd: A2 Share your story widely if you’re comfortable. When you’re authentic, people are eager to listen. Find creative ways to spread the word. We’ve seen the #IceBucketChallenge (#EndALS) and @CupidsUndieRun (#EndNF) bring tons of visibility & funding to hidden diseases #patientchat |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T2 #patientchat What I do ⤵️ ✔ Try to use the #CRPS hashtag at least once a day on social media, usually paired with #raredisease ✔ Specify in blog posts that my condition is rare, zebra🦓 life challenges ✔ Publish special posts for #RareDiseaseDay + CRPS awareness day/month https://t.co/5YLiWXUT6Y |
| Seth Rotberg @Srotberg15 RT @carlyflumer: @patientchat Engage with the community, and most importantly, EDUCATE! Not enough people know about #rare, and these diseases are vastly underrepresented in #clinicaltrials. #patientchat @NCICancerTrials |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl RT @rdmd: Okay, this is one of the best outfits we’ve seen! Go Sandra! 🦓 #rarestrong #patientchat |
| AllStripes @_allstripes RT @Rose_of_Sharon8: |
| Patient Empowerment Network @power4patients RT @Rose_of_Sharon8: |
| Alan Brewington @abrewi3010 A2 coproduce quality content on a normal disease patients platform. Help each other with signal boast and silo busting. #patientchat |
| Jeff Dubin @Power2Patient @Jennife94898836 @ZHeatherChamp @patientchat My sister-in-law whose daughter has rare skin condition #congenitalgiantnevus has an eye-catching bumper sticker on her car with spots on it. Wish I had a pic. #patientchat |
| laminopathies support group @laminopathies T2. Many rare diseases are syndromic and can have elements of common diseases. Mutations in LMNA, for example can cause metabolic problems and a reliance on insulin. Basic drugs, Like analog insulin, need to be affordable too. #patientchat |
| Patient Empowerment Network @power4patients RT @carlyflumer: @patientchat Engage with the community, and most importantly, EDUCATE! Not enough people know about #rare, and these diseases are vastly underrepresented in #clinicaltrials. #patientchat @NCICancerTrials |
 | Ross @Rossco006 @patientchat Hey everyone! Sorry I’m late but Ross is here joining you from Canada today. #Patientchat |
| 12Alice Lee @PepperPell RT @PepperPell: #CureHD #Jhdkids #huntingtonsdisease #blueandpurple #wehaveaface #HDresearchselfie |
| 12Alice Lee @PepperPell #CureHD #Jhdkids #huntingtonsdisease #blueandpurple #wehaveaface #HDresearchselfie |
| 12Alice Lee @PepperPell RT @Rose_of_Sharon8: |
| AllStripes @_allstripes RT @abrewi3010: A2 coproduce quality content on a normal disease patients platform. Help each other with signal boast and silo busting. #patientchat |
| AllStripes @_allstripes @Power2Patient @Jennife94898836 @ZHeatherChamp @patientchat Ooooh, we definitely want to see that! #patientchat |
| Patient Chat @patientchat Topic 3 (T3:) coming up... #patientchat |
| Inspire @InspireIsHealth RT @patientchat: T2: T2: What are some ways rare disease patients or supporters can increase awareness for rare diseases every day? #patientchat https://t.co/2wFDCumflZ |
| Patient Empowerment Network @power4patients @Rossco006 @patientchat Hey Ross! We just shared your blog post with the group :) Thanks again for sharing your story with us #patientchat |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @carlyflumer @patientchat @NCICancerTrials So true! I bring medical journal articles about my #raredisease to appointments with other clinicians, to make more healthcare professionals aware of it! Optimal treatment window for #CRPS = 3 months!!! #patientchat https://t.co/YvLJbGpo0j |
| AllStripes @_allstripes RT @power4patients: A2: A2: Check out @Rossco006's story and how he advocates for rare disease patients https://t.co/k1jRkCKczw #patientchat |
 | Dupuytren Research @dupuytren Get the word out, use social media. Celebrities who have these diseases are our best advocates because they reach a larger audience. Even though donations are important, so is advocacy. |
| Patient Chat @patientchat T3: When and why should rare disease patients consider getting involved in clinical trials? #patientchat https://t.co/EgPJ2xE4CA |
| Jennifer @Jeffner4118 @Rose_of_Sharon8 Myself as well! I was shy about it at first but now I know that it is so important so if people don’t like it, they can scroll on by! #patientchat |
 | Neena Nizar @NeenaNizar Sometimes for Rare Patients vulnerability is the Only bridge to build connection. |
| Jeff Dubin @Power2Patient @rdmd @Jennife94898836 @ZHeatherChamp @patientchat I will try my best :) #patientchat |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @power4patients @Rossco006 Yesss... Ross and I have the same #raredisease 🤗 #patientchat |
| Alan Brewington @abrewi3010 A2 participate in chats like #patientchat regularly. To often I think there is a belief that we should only participate when the conversation involves our specific silo. Everyone included works. |
| Patient Chat @patientchat @Crohnoid Hi Nigel, thanks for stopping by! #patientchat |
| 12Alice Lee @PepperPell RT @PepperPell: #CureHD #Jhdkids #huntingtonsdisease #blueandpurple #wehaveaface #HDresearchselfie |
| Seth Rotberg @Srotberg15 A3: Before patients can get involved in clinical trials we need to do a better job as a community to educate them on what it means to participate and understand how drug development works. We need to bring the patient voice earlier in the process #patientchat |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T3 #patientchat I spent years managing an IRB, called a Research Ethics Board or REB in Canada, so I fully support research for #rarediseases to help others🤗 I've participated in 1 clinical trial so far + other research projects ⤵️ But this is a personal decision, for each trial https://t.co/lcHKHyQVDf |
| AllStripes @_allstripes T3 Because there are so few people, in #raredisease in particular, you can have a BIG impact on your disease community by joining a trial and contributing to research. Of course, it's important to always talk with your care team before deciding if it’s right for you. #patientchat |
| 12Alice Lee @PepperPell RT @PepperPell: #CureHD #Jhdkids #huntingtonsdisease #blueandpurple #wehaveaface #HDresearchselfie |
| 12Alice Lee @PepperPell RT @PepperPell: #CureHD #Jhdkids #huntingtonsdisease #blueandpurple #wehaveaface #HDresearchselfie |
| Ross @Rossco006 A1: We will be having a flag raising at city hall here in Regina. I have also arranged for a radio interview on #rarediseaseday. #patientchat |
| Patient Chat @patientchat RT @Srotberg15: A3: A3: Before patients can get involved in clinical trials we need to do a better job as a community to educate them on what it means to participate and understand how drug development works. We need to bring the patient voice earlier in the process #patientchat |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T3 #patientchat My advice? Always ask questions if you're not sure about a #raredisease clinical trial! I blogged about this back in 2014, before #CRPS, because my blog was originally about bioethics aka biomedical ethics https://t.co/4fkr4XVYag https://t.co/sLgtT3BZuZ |
| Patient Empowerment Network @power4patients RT @Srotberg15: A3: A3: Before patients can get involved in clinical trials we need to do a better job as a community to educate them on what it means to participate and understand how drug development works. We need to bring the patient voice earlier in the process #patientchat |
| AllStripes @_allstripes RT @Srotberg15: A3: A3: Before patients can get involved in clinical trials we need to do a better job as a community to educate them on what it means to participate and understand how drug development works. We need to bring the patient voice earlier in the process #patientchat |
| Carly Flumer (she/her) @carlyflumer @patientchat When they’re most comfortable AND they have the knowledge of what they’ll be going though. (I’m looking at you #healthliteracy!) I’m in a #clinicaltrial right now that focuses on #thyroidcancer patients’ QOL at @UChicago. It’s great to have a trial focused on this! #patientchat |
| Patient Empowerment Network @power4patients @abrewi3010 100% in agreement! #patientchat |
| AllStripes @_allstripes @Rossco006 That’s amazing!!!! Great work, Ross! Thankful for you pushing to make #raredisease voices heard. #patientchat |
| Alan Brewington @abrewi3010 A3 all knowledge and experiences has unknown potential. One patients hack could change the world for many, especially in the quality of life category #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T3: T3: When and why should rare disease patients consider getting involved in clinical trials? #patientchat https://t.co/EgPJ2xE4CA |
| Jennifer @Jeffner4118 @rdmd @Power2Patient @ZHeatherChamp @patientchat https://t.co/zBcqIYsVsX #patientchat https://t.co/LXlobB1XBW |
| AllStripes @_allstripes RT @abrewi3010: A3 all knowledge and experiences has unknown potential. One patients hack could change the world for many, especially in the quality of life category #patientchat |
 | Alice Lee @alee7095 second account from Singapore @guialicegmailc1 RT @PepperPell: #CureHD #Jhdkids #huntingtonsdisease #blueandpurple #wehaveaface #HDresearchselfie |
| Inspire @InspireIsHealth RT @carlyflumer: @patientchat When they’re most comfortable AND they have the knowledge of what they’ll be going though. (I’m looking at you #healthliteracy!) I’m in a #clinicaltrial right now that focuses on #thyroidcancer patients’ QOL at @UChicago. It’s great to have a trial focused on this! #patientchat |
| AllStripes @_allstripes RT @SandraWoodsMtl: T3 #patientchat My advice? Always ask questions if you're not sure about a #raredisease clinical trial! I blogged about this back in 2014, before #CRPS, because my blog was originally about bioethics aka biomedical ethics https://t.co/4fkr4XVYag https://t.co/sLgtT3BZuZ |
| laminopathies support group @laminopathies T3. Clinical trials are the only way good treatments have chance to come to fruition. With that said, clinical trial participants should be treated fairly— inclusion criteria should not cross a line, and clinical trial participants should not be priced out. #patientchat |
| Jeff Dubin @Power2Patient @Jennife94898836 @rdmd @ZHeatherChamp @patientchat Love the funky zebra! #patientchat |
 | WOMENSHealthAlliance @WomensAlly RT @rdmd: @Rossco006 That’s amazing!!!! Great work, Ross! Thankful for you pushing to make #raredisease voices heard. #patientchat |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @Rossco006 Gooooooo Ross! I was trying here in Montréal but the language issues complicate things - everything has to be in both English & French - and my #CRPS is now causing mild cognitive impairment making it difficult to do as much as I'd like #patientchat https://t.co/wCbCA5ukIT |
| Ross @Rossco006 A2: Something as simple as a regular post to your social media can make a huge difference in increasing the awareness for #rarediseaseday. #PatientChat |
| AllStripes @_allstripes @Jennife94898836 @Power2Patient @ZHeatherChamp @patientchat Thanks for sharing this, Jennifer! Pretty outstanding. We want one! #patientchat #raredisease |
| Stephen Dolle @TheTrenches2024 @patientchat After my ALS blog, I wrote this cause #fundraising blog for Hydrocephalus w a Super-Hero type of theme, and my resemblance to a popular NFL player. #patientchat #FundraisingFriday https://t.co/h7UVwCr66O |
| WOMENSHealthAlliance @WomensAlly RT @rdmd: T3 Because there are so few people, in #raredisease in particular, you can have a BIG impact on your disease community by joining a trial and contributing to research. Of course, it's important to always talk with your care team before deciding if it’s right for you. #patientchat |
| AllStripes @_allstripes RT @laminopathies: T3. Clinical trials are the only way good treatments have chance to come to fruition. With that said, clinical trial participants should be treated fairly— inclusion criteria should not cross a line, and clinical trial participants should not be priced out. #patientchat |
| Inspire @InspireIsHealth RT @patientchat: T3: T3: When and why should rare disease patients consider getting involved in clinical trials? #patientchat https://t.co/EgPJ2xE4CA |
| Patient Empowerment Network @power4patients A3: A lot of what we do is help people navigate the facts and, especially, myths or misconceptions about #clinicaltrials of which there are many! Check out this blog post: Could a Clinical Trial Be Your Best Treatment Option? https://t.co/EwrbU0Z0nt #patientchat |
| Seth Rotberg @Srotberg15 RT @Rose_of_Sharon8: |
| Patient Empowerment Network @power4patients RT @Rossco006: A2: A2: Something as simple as a regular post to your social media can make a huge difference in increasing the awareness for #rarediseaseday. #PatientChat |
| Ross @Rossco006 @Rose_of_Sharon8 @patientchat Hi Sharon! I’ll sort of be in and out today. #PatientChat |
| Patient Empowerment Network @power4patients RT @laminopathies: T3. Clinical trials are the only way good treatments have chance to come to fruition. With that said, clinical trial participants should be treated fairly— inclusion criteria should not cross a line, and clinical trial participants should not be priced out. #patientchat |
| Patient Chat @patientchat Topic 4 (T4:) coming up... #patientchat |
| AllStripes @_allstripes @SandraWoodsMtl @Rossco006 Thanks for sharing this, Sandra. A great added perspective many of us wouldn’t have considered. #patientchat |
| Alan Brewington @abrewi3010 A3 clinical trials give hope one more chance. Hope is quality of life. #patientchat |
| Jennifer @Jeffner4118 T3: This is a good question and one that I wonder about myself. I believe that many could learn from our diseases. However, I believe that I would need to do a lot of research and consulting with my providers before committing to one. Pros vs Cons #patientchat |
| Ross @Rossco006 @power4patients @patientchat Thank you so much! Always willing to share my story in order to help raise awareness. #PatientChat |
| Patient Chat @patientchat T4: Other than enrolling in a clinical trial, what other ways can empowered patients get involved with research? #patientchat https://t.co/NITh2ku913 |
 | Heather McCullen @H_SalemOaks T3: I'm joining late but just in time for T3! They should consider getting involved as soon as they feel ready. I could list reasons for days, but one of the most important reasons with rare disease is that there is likely a small pool of eligible participants. #patientchat |
| Jennifer @Jeffner4118 @rdmd @Power2Patient @ZHeatherChamp @patientchat You are welcome! #patientchat |
| AllStripes @_allstripes @Rossco006 Yes! So simple but powerful. You don’t have to be out yelling to have your voice heard— although sometimes it can certainly seem that way. #patientchat |
| AllStripes @_allstripes RT @power4patients: A3: A3: A lot of what we do is help people navigate the facts and, especially, myths or misconceptions about #clinicaltrials of which there are many! Check out this blog post: Could a Clinical Trial Be Your Best Treatment Option? https://t.co/EwrbU0Z0nt #patientchat |
| Patient Empowerment Network @power4patients RT @patientchat: T4: T4: Other than enrolling in a clinical trial, what other ways can empowered patients get involved with research? #patientchat https://t.co/NITh2ku913 |
| Alice Lee @alee7095 second account from Singapore @guialicegmailc1 RT @PepperPell: #CureHD #Jhdkids #huntingtonsdisease #blueandpurple #wehaveaface #HDresearchselfie |
 | Laura @auract A3: for many of us in rare diseases clinical trials are the one chance for things to get better. As a parent it’s my job to understand as much as possible about the trial, the risks, and the potential outcome. Sort answer: after you’ve asked a lot of questions |
| AllStripes @_allstripes RT @abrewi3010: A3 clinical trials give hope one more chance. Hope is quality of life. #patientchat |
| Patient Chat @patientchat #patientchat |
| Klippel-Feil Syndrome Freedom @KFS_Freedom RT @patientchat: #patientchat |
| Patient Empowerment Network @power4patients A4: Patient Participation in Research: Towards Meaningful Engagement by @JBBC #patientchat https://t.co/QqEJMN51WF |
| Jeff Dubin @Power2Patient @patientchat T4: Join a patient advisory board that provides input to pharmaceutical companies on clinical trial design. #patientchat |
| Patient Chat @patientchat @auract Hi Laura, don't forget to include #patientchat in all your tweets so everyone can see your replies :) |
| laminopathies support group @laminopathies T4. Share the natural history of your rare disease. #patientchat |
| Alice Lee @alee7095 second account from Singapore @guialicegmailc1 RT @PepperPell: #CureHD #Jhdkids #huntingtonsdisease #blueandpurple #wehaveaface #HDresearchselfie |
 | Gin Jones @GiniaJo Stipends for patients in clinical trials are so important. I'm self-employed, so I could schedule visits to #xlh #clinicaltrials without having to account to a boss. I could also afford to prepay out-of-cost expenses and wait for reimbursement. Not everyone's that lucky. |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @Rossco006 @Rose_of_Sharon8 @patientchat Sending HUGE hugs, via my little #CRPS #raredisease & #chronicpain awareness-raising buddy, Max🐾 #patientchat https://t.co/TR2V7pe0jA |
| Alan Brewington @abrewi3010 A4 we need more opportunities for rare disease patients to be active participates at ALL conferences and in medical education. We really need these stories in the classroom. #patientchat |
| Heather McCullen @H_SalemOaks T4: I need to do a bit of self-promotion, @SalemOaks teaches patients about all aspects of drug development so that they can play a bigger role through out the process. Right now we're working with @CureFA_org on a course about reviewing Clinical Trial Protocols. #patientchat |
| Patient Empowerment Network @power4patients RT @abrewi3010: A4 we need more opportunities for rare disease patients to be active participates at ALL conferences and in medical education. We really need these stories in the classroom. #patientchat |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T4 #patientchat Patients with #raredisease can be involved with research in many ways! ⤵️ ✔ Sharing research results on your own social media ✔ Connecting with researchers (e.g. following on Twitter) ✔ As Patient Partner, which I'm currently doing for this project ⤵️ |
| Patient Empowerment Network @power4patients RT @Power2Patient: @patientchat T4: @patientchat T4: Join a patient advisory board that provides input to pharmaceutical companies on clinical trial design. #patientchat |
| Alice Lee @alee7095 second account from Singapore @guialicegmailc1 RT @PepperPell: #CureHD #Jhdkids #huntingtonsdisease #blueandpurple #wehaveaface #HDresearchselfie |
| Alice Lee @alee7095 second account from Singapore @guialicegmailc1 RT @PepperPell: #CureHD #Jhdkids #huntingtonsdisease #blueandpurple #wehaveaface #HDresearchselfie |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T4 #patientchat As a #raredisease patient, don't hesitate to use your own unique abilities & skills to get involved & raise awareness ⤵️ One of my favourite ways to do this was the @jthexhibit juried #art exhibition at @cusm_muhc @McGillMed #Hospital, from Oct 2018 to June 2019😁 https://t.co/qGjXz2TotE |
| Stephen Dolle @TheTrenches2024 @patientchat In 2013 I launched this creative fun, technology, and art web site for hydrocephalus with this domain under the same theme. I've since added art & #superhero stories & a Facebook fan page. #patientchat #FundraisingFriday https://t.co/ApSsVRgMOO |
| AllStripes @_allstripes T4 Researchers are always in need of more info about #raredisease patients' experiences to improve their understanding & design future trials. If you’re comfortable sharing your de-identified data, you can help grow the knowledge base for your condition through RDMD #patientchat |
| Carly Flumer (she/her) @carlyflumer @patientchat I write blogs about my #raredisease. Not sure if that counts as participating in research, but then again, I do have hands-on experience. 😉 #patientchat |
| Ross @Rossco006 @rdmd Thanks! I find that just telling your story can be one of the most powerful ways of making others aware of #raredisease. #PatientChat |
| Gin Jones @GiniaJo Definitely bring in patient voice. Too often it's not requested until after protocol is set in stone, with IRB approval. Small tweaks that only patients know about could make the results so much better. Esp in rare disorders, some standard tests may not work right. |
| Heather McCullen @H_SalemOaks T4: A relatively simple way patients can get involved is to find out if there is a patient registry for your disease. #patientchat |
| Gin Jones @GiniaJo RT @rdmd: T3 Because there are so few people, in #raredisease in particular, you can have a BIG impact on your disease community by joining a trial and contributing to research. Of course, it's important to always talk with your care team before deciding if it’s right for you. #patientchat |
| AllStripes @_allstripes @carlyflumer @patientchat YOU are certainly the expert on your #raredisease! #patientchat |
| Neena Nizar @NeenaNizar In most cases, our life depends on a clinical trial. Get involved as earnestly and as early as possible! |
 | Regli @Regli_Garesp RT @rdmd: T4 Researchers are always in need of more info about #raredisease patients' experiences to improve their understanding & design future trials. If you’re comfortable sharing your de-identified data, you can help grow the knowledge base for your condition through RDMD #patientchat |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl RT @Rossco006: @rdmd Thanks! I find that just telling your story can be one of the most powerful ways of making others aware of #raredisease. #PatientChat |
| Ross @Rossco006 @SandraWoodsMtl I’ve been having some cognitive issues myself but I do what I can when I can! #PatientChat |
 | Lieutenant O'Purra @HealSuffering I'll be at the Empowered #patientchat on Fri 2/21 1pm ET. Join me! https://t.co/GDSV052HW9 via @power4patients |
| Klippel-Feil Syndrome Freedom @KFS_Freedom T4 We have a patient registry w @SanfordCoRDS Developed by patients > https://t.co/urgvqI1oXc It's resulted in the largest & most current international patient data KFS has had. Researchers R utilizing the findings, but we are ready 4 more action. #patientchat @rdmd @patientchat |
| AllStripes @_allstripes RT @Power2Patient: @patientchat T4: @patientchat T4: Join a patient advisory board that provides input to pharmaceutical companies on clinical trial design. #patientchat |
| Gin Jones @GiniaJo RT @laminopathies: T1. My main focus to support rare disease patients is to continue to spotlight the truth that treatments must be affordable/accessible. Too much of the time patients are priced out of that which they helped bring to fruition. #patientchat |
| AllStripes @_allstripes RT @Rossco006: @rdmd Thanks! I find that just telling your story can be one of the most powerful ways of making others aware of #raredisease. #PatientChat |
| Patient Empowerment Network @power4patients @carlyflumer @patientchat Telling your story, as you do so beautifully Carly, is absolutely one of the best ways to advocate for and advance research and learning about your #raredisease #patientchat |
| Stephen Dolle @TheTrenches2024 @patientchat Here's my #patient tools blog for hydrocephalus that began as awareness for #RareDiseaseDay Day. #patientchat #mhealth https://t.co/LF9c20Ddb2 |
| Patient Chat @patientchat Last topic (T5:) coming up... #patientchat |
| Patient Chat @patientchat T5: What resources/organizations are available to help you get involved to drive positive change for rare disease? #patientchat https://t.co/qSMvzvM8lp |
| Gin Jones @GiniaJo RT @H_SalemOaks: T4: T4: A relatively simple way patients can get involved is to find out if there is a patient registry for your disease. #patientchat |
| Patient Chat @patientchat #patientchat |
 | Blue Bear is on Mastodon @spottheoutlier RT @SandraWoodsMtl: Hi #patientchat! Joining in from sunny but cold & snowy Montréal⛄ My background is in bioethics, and I've been a rare disease patient -with CRPS - since 2016 Since then, I've become active in disease awareness & patient advocacy activities https://t.co/Xh20qH93ce |
| Carly Flumer (she/her) @carlyflumer @power4patients @patientchat Thanks, Andrea! 🥰#patientchat |
| AllStripes @_allstripes T5 (1/3) We repeatedly hear from RDMD patients how fundamental Facebook groups are in finding support & resources specific to their rare disease. Your own community knows best about ways to get involved & new advancements happening— take advantage of that knowledge! #patientchat |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @abrewi3010 Definitely agree! I had the fantastic opportunity to be a Patient Partner & Twitter Team member at the @CanadianPain annual scientific meeting/conference in 2018... We need more of this! #patientchat https://t.co/1pEAXhkij5 |
| Patient Empowerment Network @power4patients RT @rdmd: T5 (1/3) We repeatedly hear from RDMD patients how fundamental Facebook groups are in finding support & resources specific to their rare disease. Your own community knows best about ways to get involved & new advancements happening— take advantage of that knowledge! #patientchat |
| AllStripes @_allstripes T5 (2/3) Patients, caregivers and other family members can also join the @RareDiseases (NORD) Rare Action Network in their state to receive policy alerts and invitations to events in their state: https://t.co/cT8KAoDYyD #patientchat |
| Gin Jones @GiniaJo #ListenToPatients |
| Patient Empowerment Network @power4patients RT @patientchat: T5: T5: What resources/organizations are available to help you get involved to drive positive change for rare disease? #patientchat https://t.co/qSMvzvM8lp |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl T5 #patientchat For #RareDiseases in US there's @RareDiseases & in Canada @raredisorders ⤵️ Also patient organization for many rare conditions & you can probably find hashtag communities on social media🤗 Canada's #CRPS group's so small it's not even on Twitter, just a website |
| AllStripes @_allstripes T5 (3/3) We’d also love for you to join us. We’re actively recruiting new patients to join us in advancing research from home. Together, we can power faster, better drug development for rare diseases. Learn more: https://t.co/zQeVXkoaY6 #patientchat |
| Heather McCullen @H_SalemOaks T5: I should have saved my shameless self promotion for this topic. #patientchat |
| Carly Flumer (she/her) @carlyflumer @patientchat @RareDiseases, @_OurOdyssey_, @teaminspire, @power4patients, @ThyCaInc #patientchat |
| Lieutenant O'Purra @HealSuffering A1: I will be providing information about several rare diseases on my facebook page. Education & sharing of information can alleviate stress when facing a rare disease. https://t.co/p4mSdNsgbj #patientchat #RareDiseaseDay |
| Patient Chat @patientchat #patientchat |
| Carly Flumer (she/her) @carlyflumer @rdmd Yes! Love my Facebook support groups! #patientchat |
| Patient Chat @patientchat @NeenaNizar Hi Neena, don't forget to include #patientchat in all your tweets! |
| Lisa Davis Budzinski @lisadbudzinski RT @SandraWoodsMtl: T4 #patientchat Patients with #raredisease can be involved with research in many ways! ⤵️ ✔ Sharing research results on your own social media ✔ Connecting with researchers (e.g. following on Twitter) ✔ As Patient Partner, which I'm currently doing for this project ⤵️ |
| Seth Rotberg @Srotberg15 A5: It depends on your needs and what you hope to get involved in. Looking within your disease specific community is always a good first step. If you’re a young adult and your community doesn’t offer much for you then you could always check out @_OurOdyssey_ #patientchat |
| Heather McCullen @H_SalemOaks @NeenaNizar @patientchat I'm curious to know more about this. #patientchat |
| Seth Rotberg @Srotberg15 RT @carlyflumer: @patientchat @RareDiseases, @_OurOdyssey_, @teaminspire, @power4patients, @ThyCaInc #patientchat |
| Alan Brewington @abrewi3010 A5 people are the greatest resource. We all have knowledge, experience, expertise that can change the world when combined. It’s hard to ask for help as a chronic patient but the magic available by asking is inspiring #patientchat |
| Blue Bear is on Mastodon @spottheoutlier RT @SandraWoodsMtl: T4 #patientchat Patients with #raredisease can be involved with research in many ways! ⤵️ ✔ Sharing research results on your own social media ✔ Connecting with researchers (e.g. following on Twitter) ✔ As Patient Partner, which I'm currently doing for this project ⤵️ |
| AllStripes @_allstripes RT @abrewi3010: A5 people are the greatest resource. We all have knowledge, experience, expertise that can change the world when combined. It’s hard to ask for help as a chronic patient but the magic available by asking is inspiring #patientchat |
| Jennifer @Jeffner4118 T4: I am just starting a website and a blog and in the initial stages of writing an ebook. I believe that by telling my story that it will raise awareness and if it can help just one person, then that will be fulfilling. #patientchat |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @Rossco006 It's so tough, more than the pain - I think. Every time I think of something I'd like to do, I have to consider whether I have the capacity now - sadly the answer is usually no 😖 #patientchat |
| Our Odyssey @_OurOdyssey_ RT @Srotberg15: A5: A5: It depends on your needs and what you hope to get involved in. Looking within your disease specific community is always a good first step. If you’re a young adult and your community doesn’t offer much for you then you could always check out @_OurOdyssey_ #patientchat |
| Patient Chat @patientchat @taylorkane23 @remember_girls Welcome Taylor! We're glad you could join us today! #patientchat |
| Gin Jones @GiniaJo T4: It's not possible yet, because we need medical community support for it, but I'd like to see #patientvoice on IRB and peer review committees for studies/articles on their rare disorders. #patientchat |
| Ross @Rossco006 A3: I think this can depend on the #raredisease that you are living with. With a rare disease like #crps lots of us struggle to find a treatment plan that works. Clinical trials could be a great option to get involved in but only if they’re right for you. #PatientChat |
| Klippel-Feil Syndrome Freedom @KFS_Freedom T5 We've connected/partnered w @GlobalGenes @RareDiseases @RareAdvocates @ORDR @TheMightySite @SanfordResearch @PatientWorthy @harmonize4hope @US_Pain @ThinkGenetic to name a few 4 #raredisease along w standout advocates such as @RarePOV, @NeenaNizar and all of you! #patientchat |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @H_SalemOaks What do you mean? I was thinking this was meant to be a positive chat event, but it's my first time on #patientchat... |
| Alan Brewington @abrewi3010 @SandraWoodsMtl @CanadianPain Congratulations and yes we do need more of this! #patientchat |
| Patient Empowerment Network @power4patients @rdmd Did you know that there's a Facebook group that we created to engage more people in the conversations we have on #patientchat? It's the Empowered Patient Chat group on FB and we would love for you to join us! |
| AllStripes @_allstripes RT @power4patients: @rdmd Did you know that there's a Facebook group that we created to engage more people in the conversations we have on #patientchat? It's the Empowered Patient Chat group on FB and we would love for you to join us! |
| Heather McCullen @H_SalemOaks Next week we'll be releasing the first episode of our new podcast that follows a father's journey as he looks for treatments for his son's rare disease. We hope it will help other patients and caregivers on their journey. Follow me or @SalemOaks for more updates. #patientchat |
 | Canadian Pain Society @CanadianPain RT @SandraWoodsMtl: @abrewi3010 Definitely agree! I had the fantastic opportunity to be a Patient Partner & Twitter Team member at the @CanadianPain annual scientific meeting/conference in 2018... We need more of this! #patientchat https://t.co/1pEAXhkij5 |
| Stephen Dolle @TheTrenches2024 @rdmd @patientchat @CupidsUndieRun I've been working on a book on my #FDA #patientadvocacy #innovation experiences for quite some time, but am yet to finish it because the story has evolved & changed. #patientchat https://t.co/2Mmh3gboSq |
| Patient Empowerment Network @power4patients RT @abrewi3010: A5 people are the greatest resource. We all have knowledge, experience, expertise that can change the world when combined. It’s hard to ask for help as a chronic patient but the magic available by asking is inspiring #patientchat |
 | Harmony 4 Hope @harmonize4hope RT @KFS_Freedom: T5 We've connected/partnered w @GlobalGenes @RareDiseases @RareAdvocates @ORDR @TheMightySite @SanfordResearch @PatientWorthy @harmonize4hope @US_Pain @ThinkGenetic to name a few 4 #raredisease along w standout advocates such as @RarePOV, @NeenaNizar and all of you! #patientchat |
| Neena Nizar @NeenaNizar @patientchat Biggest resource is other patients. Some patients may be able to empower others who do not feel as capable of making their voice heard. Empowered, engaged e-patients are a growing social movement. #patientchat |
| AllStripes @_allstripes @KFS_Freedom @GlobalGenes @RareDiseases @RareAdvocates @ORDR @TheMightySite @SanfordResearch @PatientWorthy @harmonize4hope @US_Pain @ThinkGenetic @RarePOV @NeenaNizar Great group of folks!! We suggest following all of them. #patientchat |
| Neena Nizar @NeenaNizar RT @KFS_Freedom: T5 We've connected/partnered w @GlobalGenes @RareDiseases @RareAdvocates @ORDR @TheMightySite @SanfordResearch @PatientWorthy @harmonize4hope @US_Pain @ThinkGenetic to name a few 4 #raredisease along w standout advocates such as @RarePOV, @NeenaNizar and all of you! #patientchat |
| Klippel-Feil Syndrome Freedom @KFS_Freedom @NeenaNizar We couldn't agree more! @RDMD @PatientChat #clinicaltrials #research and #collaboration is 🗝🦓💪🏼💖 Yes patients definitely need a full understanding as the ones with the needed data. #patientchat https://t.co/aBCeYWQ3D4 |
| AllStripes @_allstripes We’ll want to listen to this #raredisease podcast! #patientchat |
| Heather McCullen @H_SalemOaks @SandraWoodsMtl I was joking at my own expense. I posted about @SalemOaks for Q4 as well. (I can't help that the topic happens to be pretty on topic for us) #patientchat |
| Ross @Rossco006 A4: There are lots of ways to get involved. Sometimes though it’s as simple as approaching those doing the research and just saying you want to get involved. #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 |
| Klippel-Feil Syndrome Freedom @KFS_Freedom RT @Rossco006: A4: A4: There are lots of ways to get involved. Sometimes though it’s as simple as approaching those doing the research and just saying you want to get involved. #PatientChat |
| Neena Nizar @NeenaNizar RT @KFS_Freedom: @NeenaNizar We couldn't agree more! @RDMD @PatientChat #clinicaltrials #research and #collaboration is 🗝🦓💪🏼💖 Yes patients definitely need a full understanding as the ones with the needed data. #patientchat https://t.co/aBCeYWQ3D4 |
| Klippel-Feil Syndrome Freedom @KFS_Freedom RT @rdmd: We’ll want to listen to this #raredisease podcast! #patientchat |
| Neena Nizar @NeenaNizar RT @rdmd: @KFS_Freedom @GlobalGenes @RareDiseases @RareAdvocates @ORDR @TheMightySite @SanfordResearch @PatientWorthy @harmonize4hope @US_Pain @ThinkGenetic @RarePOV @NeenaNizar Great group of folks!! We suggest following all of them. #patientchat |
| Blue Bear is on Mastodon @spottheoutlier RT @SandraWoodsMtl: T3 #patientchat I spent years managing an IRB, called a Research Ethics Board or REB in Canada, so I fully support research for #rarediseases to help others🤗 I've participated in 1 clinical trial so far + other research projects ⤵️ But this is a personal decision, for each trial https://t.co/lcHKHyQVDf |
| Jeff Dubin @Power2Patient RT @srotberg15 Important...there's still a gap between the input pharma companies want from patients and what patients are sometimes able to provide. #patientchat |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl #patientchat Never doubt what an informed #raredisease patient can do... @IStedman "diagnosed his own rare disease, using Google" via @NightShiftMD @CBCHealth https://t.co/9n7YsHXotE |
 | CareMo @caring_mobile RT @ProfessorMac: @patientchat Here's my #patient tools blog for hydrocephalus that began as awareness for #RareDiseaseDay Day. #patientchat #mhealth https://t.co/LF9c20Ddb2 |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @H_SalemOaks @SalemOaks Ah, got it!🤗 #patientchat |
| Patient Empowerment Network @power4patients @SandraWoodsMtl @Rossco006 I'm so sorry to hear that Sandra. My mother suffered from a #raredisease @TheMyositisAssc and I know how tough it was for her. I'll be sending positive thoughts your way 💛💛💛#patientchat |
| Lieutenant O'Purra @HealSuffering A2: I use Social Media as a way to share information, links and online support group access. Pinterest is a way that I use to store links regarding rare diseases. https://t.co/exSWgMNoYQ #patientchat #RareDiseases |
| AllStripes @_allstripes CT We’ve really been reminded today of the power of sharing your story. If it touches just one person, the word can spread from there like wildfire. Don’t be afraid to share your experience, whether in person or online. People will listen. Don’t doubt yourself. #patientchat |
| AllStripes @_allstripes RT @SandraWoodsMtl: #patientchat Never doubt what an informed #raredisease patient can do... @IStedman "diagnosed his own rare disease, using Google" via @NightShiftMD @CBCHealth https://t.co/9n7YsHXotE |
| Patient Empowerment Network @power4patients RT @rdmd: CT We’ve really been reminded today of the power of sharing your story. If it touches just one person, the word can spread from there like wildfire. Don’t be afraid to share your experience, whether in person or online. People will listen. Don’t doubt yourself. #patientchat |
| Patient Chat @patientchat RT @rdmd: CT We’ve really been reminded today of the power of sharing your story. If it touches just one person, the word can spread from there like wildfire. Don’t be afraid to share your experience, whether in person or online. People will listen. Don’t doubt yourself. #patientchat |
| Alan Brewington @abrewi3010 Ct we are all lots of hurt which means we have earned the right to bad days/weeks. However, we still have the right to a good life. So this weekend make sure you smile for awhile. #patientchat |
| AllStripes @_allstripes RT @taylorkane23: T5: |
| Seth Rotberg @Srotberg15 RT @taylorkane23: T5: |
| Patient Chat @patientchat #patientchat is your community. Thanks for helping make it great. Reach out to @power4patients and @patientchat anytime. |
| AllStripes @_allstripes RT @abrewi3010: Ct we are all lots of hurt which means we have earned the right to bad days/weeks. However, we still have the right to a good life. So this weekend make sure you smile for awhile. #patientchat |
| Neena Nizar @NeenaNizar RT @Rose_of_Sharon8: |
| Patient Chat @patientchat Thanks so much @rdmd for sharing your insights and being our special guest for today’s #patientchat |
| Inspire @InspireIsHealth RT @patientchat: T5: T5: What resources/organizations are available to help you get involved to drive positive change for rare disease? #patientchat https://t.co/qSMvzvM8lp |
| Patient Chat @patientchat Thanks to all for joining our Empowered #patientchat. We'll tweet out the transcript about 15 minutes past the hour |
| AllStripes @_allstripes Thanks for having us, @patientchat! And thank you to everyone who made today such an engaging convo. We have many powerful stories of #raredisease patients at https://t.co/0IerIEWhcd, and mark your calendars for #RareDiseaseDay on Feb. 29 for more! #patientchat |
| Patient Chat @patientchat We’ll be back in two weeks for another Empowered #patientchat on March 6th. Hope to see you there! https://t.co/WO3iJp2Zhy |
| Gin Jones @GiniaJo RT @rdmd: We’ll want to listen to this #raredisease podcast! #patientchat |
| Patient Chat @patientchat Keep the conversation going between chats with hashtag #patientchat and let us know if you are interested in being a special guest on @patientchat |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl Thanks so much everyone! This was my first #patientchat & I'll try to make it back 🤗 https://t.co/2XI0s2f4AO |
| AllStripes @_allstripes @Rose_of_Sharon8 @taylorkane23 We agree! “Old school” WORKS— let’s keep it going! :) #patientchat |
| Patient Chat @patientchat @SandraWoodsMtl Thanks for joining Sandra! We'd love to see you back here again on #patientchat :) |
| Inspire @InspireIsHealth RT @patientchat: We’ll be back in two weeks for another Empowered #patientchat on March 6th. Hope to see you there! https://t.co/WO3iJp2Zhy |
| AllStripes @_allstripes @SandraWoodsMtl Loved your insights, Sandra! Hope to keep seeing you on #patientchat. Thanks for joining us! |
| Ross @Rossco006 A5: One of the organizations I’m involved with to drive change is #OutrunRare and organization founded by @runproctor. Then there are amazing organizations like @GlobalGenes who are doing amazing work for #raredisease. #PatientChat |
| Lieutenant O'Purra @HealSuffering A3: If you have a chance to participate in a clinical trial, do it! Clinical trials determine whether a treatment will be effective with the goal of improving your quality of life and the lives of others suffereing from a particular #RareDisease #patientchat |
| Heather McCullen @H_SalemOaks I swear I'm not just a marketing bot. For those commenting about patient education check out our article series explaining our approach to education. @NeenaNizar @HealSuffering #patientchat https://t.co/CuBAQDc7or https://t.co/NPj6ugh7GY https://t.co/Mlm4agCgya |
| AllStripes @_allstripes Okay, quick coffee & stretch break, everyone, and then let’s dive on into the #NIHchat! #patientchat |
| Seth Rotberg @Srotberg15 @Rose_of_Sharon8 @rdmd @NeenaNizar Appreciate your insight as well Sharon! Hope you are doing well :) #patientchat |
| Sandra Woods, CIPP/C; she/her @SandraWoodsMtl @rdmd Same here, from #RareDisease #patientchat to #RDDNIH chat! https://t.co/1905Sa6E0V |
 | ThyCa Inc. @ThyCaInc RT @carlyflumer: @patientchat @RareDiseases, @_OurOdyssey_, @teaminspire, @power4patients, @ThyCaInc #patientchat |
| Lieutenant O'Purra @HealSuffering A4: Good question! #Volunteer at an organization that brings focus to the #raredisease that you are facing. If there are no organizations, create one! Bring attention to it by organizing a walk and donate the money to research. #patientchat |
 | 🐰🇺🇸Annie Loves Covfefe🇺🇸🐰 @4annegs RT @ZHeatherChamp: A1: A1: I have my blog which I’ll write on, and have a few denim ribbon pins from @GlobalGenes I plan to give to friends/medical staff. #patientchat #pten #RareDisease |
| 🐰🇺🇸Annie Loves Covfefe🇺🇸🐰 @4annegs RT @ZHeatherChamp: I’m Heather, person living with 2 rare diseases in 2011 finding I need an assistant to manage my life with both of them! #btsm #pten #patientchat |
 | kathy kastner @KathyKastner RT @SandraWoodsMtl: #patientchat Never doubt what an informed #raredisease patient can do... @IStedman "diagnosed his own rare disease, using Google" via @NightShiftMD @CBCHealth https://t.co/9n7YsHXotE |
#patientchat content from Twitter.