#patientchat Transcript

Healthcare social media transcript of the #patientchat hashtag.
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See #patientchat Influencers/Analytics.

ProfileTweet
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…
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
Jennifer @Jeffner4118
RT @patientchat: 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
@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
WOMENSMedWELLNESS @WOMENSMEDWELL
RT @rdmd: We’re excited to be hosting this #patientchat in honor of upcoming #RareDiseaseDay, which occurs every 4th year on the RARE day o…
@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: 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: How Rare Disease Patients Can Get Involved" Empowered #patientchat w/@rdmd Friday 2/21 1pmET …
@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
AllStripes @_allstripes
@Srotberg15 @teaminspire @_OurOdyssey_ Thanks for joining, Seth!
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: How Rare Disease Patients Can Get Involved https://t.co/lLrD3P2eUC
WOMENSMedWELLNESS @WOMENSMEDWELL
RT @KFS_Freedom: #patientchat begins NOW 12 noon CT! Don't miss it! With @rdmd & @patientchat @power4patients 🦓#RareDisease #RareDiseaseDay
Patient Chat @patientchat
Time to start our topics. Here comes T1: #patientchat
laminopathies support group @laminopathies
Hi I’m Mary, just joining. #patientchat
@Srotberg15
RT @patientchat: 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 th…
JeffD @PatientPower2
@patientchat Hi, I'm Jeff at @Power2Patient. Continuing the diagnostic odyssey to figure out which zebra(s) are afflicting my wife. #patientchat
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
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 per…
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
Hao-Fountain Syndrome @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 th…
Heather 🇺🇸 @ZHeatherChamp
@carlyflumer @patientchat Ooooh! What kind of event? #patientchat
Inspire @InspireIsHealth
RT @KFS_Freedom: T1: @patientchat @rdmd we're encouraging our community and the rare disease community to 'show their stripes' in quick vid…
AllStripes @_allstripes
RT @KFS_Freedom: T1: @patientchat @rdmd we're encouraging our community and the rare disease community to 'show their stripes' in quick vid…
Heather 🇺🇸 @ZHeatherChamp
[REDACTED USER] 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: I have my blog which I’ll write on, and have a few denim ribbon pins from @GlobalGenes I plan to give to friends/med…
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
@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: @patientchat @rdmd we're encouraging our community and the rare disease community to 'show their stripes' in quick vid…
AllStripes @_allstripes
RT @laminopathies: T1. My main focus to support rare disease patients is to continue to spotlight the truth that treatments must be afforda…
Heather 🇺🇸 @ZHeatherChamp
@Rose_of_Sharon8 LOL ❤️ #patientchat
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 https://t.co/wqrxv8ytD0
Patient Chat @patientchat
Topic 2 (T2:) coming up... #patientchat
VCVaile @VCVaile
Follow now! #RareDisease @PatientChat #whatmakesmerarePH
@Srotberg15
RT @laminopathies: T1. My main focus to support rare disease patients is to continue to spotlight the truth that treatments must be afforda…
12Alice Lee @PepperPell
#CureHD #Jhdkids #huntingtonsdisease #blueandpurple #wehaveaface #HDresearchselfie
12Alice Lee @PepperPell
RT @patientchat: 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 o…
@Srotberg15
RT @teaminspire: @patientchat T1: We're honored to be participating in #RareDiseaseDay events in NYC, Boston, and DC, with @Srotberg15 spea…
12Alice Lee @PepperPell
RT @patientchat: Welcome to #patientchat - where patients, care partners, and advocates come to learn from each other and discuss topics of…
12Alice Lee @PepperPell
RT @patientchat: 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: What are some ways rare disease patients or supporters can increase awareness for rare diseases every day? #patientcha
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…
Patient Empowerment Network @power4patients
A2: Check out [REDACTED USER]'s story and how he advocates for rare disease patients https://t.co/k1jRkCKczw #patientchat
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…
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
@Srotberg15
@power4patients @MassBio @Chris_Anselmo @LexiPappas_ Appreciate it a lot 😊
12Alice Lee @PepperPell
RT @rdmd: Happening SOON! Join in with #patientchat to discuss #raredisease TODAY!
@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…
@Srotberg15
RT @carlyflumer: @patientchat Engage with the community, and most importantly, EDUCATE! Not enough people know about #rare, and these disea…
Alan Brewington @abrewi3010
A2 coproduce quality content on a normal disease patients platform. Help each other with signal boast and silo busting. #patientchat
JeffD @PatientPower2
@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 disea…
AllStripes @_allstripes
RT @abrewi3010: A2 coproduce quality content on a normal disease patients platform. Help each other with signal boast and silo busting. #pa
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: What are some ways rare disease patients or supporters can increase awareness for rare diseases every day? #patientcha
Patient Empowerment Network @power4patients
[REDACTED USER] @patientchat Hey Ross! We just shared your blog post with the group :) Thanks again for sharing your story with us #patientchat
AllStripes @_allstripes
RT @power4patients: A2: Check out [REDACTED USER]'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.
JeffD @PatientPower2
@rdmd @Jennife94898836 @ZHeatherChamp @patientchat I will try my best :) #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
[REDACTED USER] Hi Nigel, thanks for stopping by! #patientchat
@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
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
Patient Chat @patientchat
RT @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 i…
Patient Empowerment Network @power4patients
RT @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 i…
AllStripes @_allstripes
RT @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 i…
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
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
AllStripes @_allstripes
[REDACTED USER] That’s amazing!!!! Great work, Ross! Thankful for you pushing to make #raredisease voices heard. #patientchat
Patient Empowerment Network @power4patients
RT @patientchat: T3: When and why should rare disease patients consider getting involved in clinical trials? #patientchat https://t.co/EgPJ…
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 th…
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
JeffD @PatientPower2
@Jennife94898836 @rdmd @ZHeatherChamp @patientchat Love the funky zebra! #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
AllStripes @_allstripes
RT @laminopathies: T3. Clinical trials are the only way good treatments have chance to come to fruition. With that said, clinical trial par…
Inspire @InspireIsHealth
RT @patientchat: T3: When and why should rare disease patients consider getting involved in clinical trials? #patientchat https://t.co/EgPJ…
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
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 par…
Patient Chat @patientchat
Topic 4 (T4:) coming up... #patientchat
AllStripes @_allstripes
[REDACTED USER] [REDACTED USER] 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
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
[REDACTED USER] 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: A lot of what we do is help people navigate the facts and, especially, myths or misconceptions about #clinicaltrial
Patient Empowerment Network @power4patients
RT @patientchat: T4: Other than enrolling in a clinical trial, what other ways can empowered patients get involved with research? #patientc
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 https://t.co/80EfmH3lzJ
Patient Empowerment Network @power4patients
A4: Patient Participation in Research: Towards Meaningful Engagement by @JBBC #patientchat https://t.co/QqEJMN51WF
JeffD @PatientPower2
@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
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
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 educati…
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 @Power2Patient: @patientchat T4: Join a patient advisory board that provides input to pharmaceutical companies on clinical trial design.…
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
@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
@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…
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!
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: Join a patient advisory board that provides input to pharmaceutical companies on clinical trial design.…
@GiniaJo
RT @laminopathies: T1. My main focus to support rare disease patients is to continue to spotlight the truth that treatments must be afforda…
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
@GiniaJo
RT @H_SalemOaks: T4: A relatively simple way patients can get involved is to find out if there is a patient registry for your disease. #pat
Patient Chat @patientchat
#patientchat
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
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 the…
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
@GiniaJo
#ListenToPatients
Patient Empowerment Network @power4patients
RT @patientchat: T5: What resources/organizations are available to help you get involved to drive positive change for rare disease? #patien
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!
@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
@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
AllStripes @_allstripes
RT @abrewi3010: A5 people are the greatest resource. We all have knowledge, experience, expertise that can change the world when combined.…
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
Our Odyssey @_OurOdyssey_
RT @Srotberg15: A5: It depends on your needs and what you hope to get involved in. Looking within your disease specific community is always…
Patient Chat @patientchat
@taylorkane23 @remember_girls Welcome Taylor! We're glad you could join us today! #patientchat
@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
Klippel-Feil Syndrome Freedom @KFS_Freedom
T5 We've connected/partnered w @GlobalGenes @RareDiseases @RareAdvocates @ORDR @TheMightySite @SanfordResearch @PatientWorthy @harmonize4hope [REDACTED USER] @ThinkGenetic to name a few 4 #raredisease along w standout advocates such as @RarePOV, @NeenaNizar and all of you! #patientchat
Alan Brewington @abrewi3010
[REDACTED USER] [REDACTED USER] 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…
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
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.…
Harmony 4 Hope @harmonize4hope
RT @KFS_Freedom: T5 We've connected/partnered w @GlobalGenes @RareDiseases @RareAdvocates @ORDR @TheMightySite @SanfordResearch @PatientWor
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 [REDACTED USER] @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 @PatientWor
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
[REDACTED USER] 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
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
Neena Nizar @NeenaNizar
RT @KFS_Freedom: @NeenaNizar We couldn't agree more! @RDMD @PatientChat #clinicaltrials #research and #collaboration is 🗝🦓💪🏼💖 Yes patients…
Klippel-Feil Syndrome Freedom @KFS_Freedom
RT @rdmd: We’ll want to listen to this #raredisease podcast! #patientchat https://t.co/Xr9bm25hAy
Neena Nizar @NeenaNizar
RT @rdmd: @KFS_Freedom @GlobalGenes @RareDiseases @RareAdvocates @ORDR @TheMightySite @SanfordResearch @PatientWorthy @harmonize4hope @US_P
JeffD @PatientPower2
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
CareMo @caring_mobile
RT @ProfessorMac: @patientchat Here's my #patient tools blog for hydrocephalus that began as awareness for #RareDiseaseDay Day. #patientcha
Patient Empowerment Network @power4patients
[REDACTED USER] [REDACTED USER] 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
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 t…
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 t…
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
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 go…
Neena Nizar @NeenaNizar
RT @Rose_of_Sharon8: #patientchat Thanks 4 chat w @rdmd & wonderful advocates! I was most enlightened that @Srotberg15 & @NeenaNizar voice…
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: What resources/organizations are available to help you get involved to drive positive change for rare disease? #patien
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
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
@GiniaJo
RT @rdmd: We’ll want to listen to this #raredisease podcast! #patientchat https://t.co/Xr9bm25hAy
AllStripes @_allstripes
@Rose_of_Sharon8 @taylorkane23 We agree! “Old school” WORKS— let’s keep it going! :) #patientchat
Patient Chat @patientchat
[REDACTED USER] 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
[REDACTED USER] Loved your insights, Sandra! Hope to keep seeing you on #patientchat. Thanks for joining us!
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
@Srotberg15
@Rose_of_Sharon8 @rdmd @NeenaNizar Appreciate your insight as well Sharon! Hope you are doing well :) #patientchat
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: I have my blog which I’ll write on, and have a few denim ribbon pins from @GlobalGenes I plan to give to friends/med…
🐰🇺🇸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!…
#patientchat content from Twitter.