Two Disabled Dudes @2DDPodcast
@kyleabryant and @seanbaumstark have a rare disease. This podcast is all about cultivating the courage to live beyond any circumstance and laugh along the way. twodisableddudes.com The Web Joined February 2017-
Tweets373
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Followers779
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Following439
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Likes489
Let’s gooooo! @EveryCure is quite literally changing the world!
Let’s gooooo! @EveryCure is quite literally changing the world!
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This is exciting!! Congratulations - it’s go-time!! 🔥👊🏼💪🏻
This is exciting!! Congratulations - it’s go-time!! 🔥👊🏼💪🏻
See Prescribing Info: bit.ly/SKYCLARYS-PI. Watch for Important Safety Info. Sponsored by @biogen. This Rare Disease Day we recognize the 1 year anniversary of the FDA approval of SKYCLARYS. Learn more here: bit.ly/3Uf6L3T.
Sponsored by @ReataPharma. Watch for Important Safety Info & see Prescribing Info: bit.ly/SKYCLARYS-PI. 5/20 is #FA Awareness Day, & there’s finally a treatment option for FA–SKYCLARYS. Learn more at bit.ly/3KnYtQy, & talk to your doctor to see if it’s right for you.
Sponsored by @ReataPharma. Watch for Important Safety Info & see Prescribing Info: bit.ly/SKYCLARYS-PI. We’re excited SKYCLARYS is now approved for Friedreich ataxia patients 16 years & older. Learn more at bit.ly/3ZLiaHS, & talk to your doctor about SKYCLARYS.
Looking for a delicious #keto bar? We’ve got a brand you must try! Meet the founder of @ketokrisp and hear his #CanDo story in ep198 twodisableddudes.com/198-whats-your…
In 2017, @HorizonNews invited 2DD to do a LIVE show at their Chicago office. This was our first recording in front of a live audience! Horizon took a chance on 2 rookies to talk about Rare Diseases. Listen to that episode & count @KyleABryant’s “um’s” twodisableddudes.com/020-live-horiz…
Two Disabled Dudes retweeted
.@HorizonNews created a program for people living with rare diseases to connect & share their stories! Our @KyleABryant of @2DDPodcast visited #HorizonTherapeutics to share what #RAREis means to him. Share your own #RAREis story by visiting rareiscommunity.com
This is rewarding to see!
This is everything 💯
We had a meaningful conversation with leaders @cziscience which you can hear in ep189 - a phenomenal few days with leaders in #RareDisease
Two Disabled Dudes retweeted
You can hear more about this from #thedudes at @2DDPodcast in ep185! We’re excited to follow our friends at Google in their mission to improve life through their tech…
You can hear more about this from #thedudes at @2DDPodcast in ep185! We’re excited to follow our friends at Google in their mission to improve life through their tech…
Two Disabled Dudes retweeted
It's raining So time to listen to @2DDPodcast podcast while in the #TeamAtaxia training studio (garage) on #Tricycle for @SuperheroTri Event #Disability #RareDisease #Ataxia
Looking forward to this one!
Two Disabled Dudes retweeted
A 7 year old @KIF1A kiddo just stole my @2DDPodcast hat! I guess I’ll have to get another one. You can get your own hat here: twodisableddudes.com/shop/
Joe Sooch points out that we only have one life to live so we better make the most of it. He has a rare disease called #Fibrodysplasiaossificansprogressiva #FOP – a #geneticdisorder that causes soft tissues to transform permanently into bone. twodisableddudes.com/178-man-turnin…
Two Disabled Dudes retweeted
Reata Pharmaceuticals Completes Rolling Submission of New Drug Application for Omaveloxolone for the Treatment of Patients with Friedreich’s Ataxia Click here to read the full press release: buff.ly/3Lx0UPA
Effie Parks @OnceUponAGene
6K Followers 4K Following Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Neena Nizar @NeenaNizar
2K Followers 2K Following Founder & Executive Director of The Jansen's Foundation. KOL,TEDx Speaker, Educator, Change Leader, https://t.co/Ty1g3WHftT Opinions are my own
Global Genes @GlobalGenes
29K Followers 6K Following Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
David Fajgenbaum, MD @DavidFajgenbaum
12K Followers 3K Following @Penn physician-scientist-patient who 'cured thyself' | Advancing @CureCastleman + @EveryCure | National Bestseller #ChasingMyCure https://t.co/26OS13etrF
Stephanie Fischer @RarePOV
7K Followers 5K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
Luke Rosen @lukebrosen
2K Followers 424 Following Dad of two remarkable kids. Founder of https://t.co/GkrwXhfkoy & https://t.co/eWtcezWeJc. Works with families affected by neurological diseases & cancer. Firefighter. Baseball & hockey.
Marni Cartelli @Purrfectly_Rare
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FA Research Alliance @CureFA_org
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National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
Tracy Dixon-Salazar @TracyDixonSalaz
3K Followers 934 Following Mom. Rare Disease & LGS Advocate. Neuroscientist. The largest most neglected healthcare resource, worldwide, is the patient. Executive Director @LGS_Foundation
Adam Johnson - DadVoc... @RareDiseaseDad
1K Followers 984 Following Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
National Ataxia Found... @NAF_Ataxia
3K Followers 666 Following Our mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.
RARE Revolution Magaz... @RareRevolutionM
12K Followers 7K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Heidi Grabenstatter @PatientIntv
2K Followers 2K Following RDCA-DAP Scientific Director @CPathInstitute, patient advocate, neuroscientist, and proud mom. Opinions are my own.
Andra Stratton @livinlavidalopo
1K Followers 523 Following Co-Founder of Lipodystrophy United Program Associate for #RareAsOne @CZIScience. Always hungry. Sometimes funny. Opinions are my own.
KIF1A.ORG @KIF1A
1K Followers 590 Following We connect families affected by KIF1A and relentlessly work to accelerate research. We need to find treatment for this rare neurodegenerative disease. Fast.
Beacon for Rare Disea... @RareBeacon
12K Followers 10K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Rare Patient Voice @rarepatientvoic
2K Followers 3K Following We help clients find rare & non-rare disease patients & caregivers for research studies, & connect patients & caregivers with paid research opportunities.
Ana Mingorance @CNSdrughunter
3K Followers 1K Following 🧠 🧬 Neuroscientist. Looking for new medicines for CDKL5, SCN1A, SHANK3, DHPS and a few others. @cnsdrughunter.bsky.social
PKD-Free Alliance @PKDFreeAlliance
31 Followers 99 Following The PKD-Free Alliance is committed to enhancing generational health by ensuring a PKD-free future. We provide grants to families that want a PKD-free child.
Jennifer Onsrud @jenorris07
107 Followers 588 Following 🦠Pharmacist 💊BCIDP | 💙🎀Mommy | Christian ✝️ | lake Norman 💕| views and opinions are my own
TASNEEM @iamtasneem
1K Followers 429 Following • Artist • Caregiver • Disability Justice • (t'us-knee'm) تسنيم • they/them/elle •🍉
Richard Baumstark @RichardBau67163
0 Followers 7 Following
Spino Serebellar Atax... @Konur48728623
202 Followers 3K Following Neuroscience Research. Cerebellum Research S.C.A Grup Turkiye https://t.co/CLa0U1Mfmu
Ben Forred @ZebraSites
50 Followers 264 Following I make and manage awesome websites for #raredisease advocacy organizations. Husband, father, rare disease patient/researcher, web designer 🤓
Martin Rose @MartinRose94034
0 Followers 4 Following
Calvin Hawe @calvin_hawe
139 Followers 2K Following Chemistry Research Associate @OctantBio; Former Biochemistry Student at Notre Dame @NDscience Substack Blog: https://t.co/17S0GIfNnY
Barod Media @Barod_Media
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Solid Biosciences @Solid_Bio
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Maceo Carter @MaceoCarter
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Zach Wichter @zlwichter
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mm @mpmesnny
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Michelle beagan @mrooney84
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Susanna Ling @sling888
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رنح فريدريك... @FA_ARBIC
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Christopher Roth @theCrisRoth
476 Followers 191 Following Owner of @TexSportsReview media network. Proudly Texas owned & operated media!
Rare & Ready: A Genet... @rare_ready
247 Followers 180 Following Activating on policies that limit access. Supported by Acadia, BioMarin, CSL Behring, Sanofi, & Ultragenyx. Social media guidelines https://t.co/6ZYhchAmHS
Patient73 Foundation @Patient73org
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Angie B @BfdangieB
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WL McM @WL_McM
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SMaria, MPH @SMariaDMPH
67 Followers 705 Following
Paediatric Brain Tumo... @PaedBTI
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Linseigh✨ @Linseigh
457 Followers 472 Following Actress, singer, writer, & patient advocate. Disability Champion Award Winner @thebbtas. 2nd Cover Faye & Tina @thedriftersgirl. Rep. @cowleyknoxguy.
Peter Tait @peter_GP5660
383 Followers 2K Following South African Provincial Freelance Tourist Guide GP 5660
Brian Dawson @bkdawson1313
340 Followers 468 Following Librarian, @TedXOilCityLibrary founder, autodidact. Paramedic, Police Officer in a previous life. Tweets & thoughts are my own.
Sarah Clark @sarah_clark_84
1K Followers 4K Following ❤️🐱 Postgrad Research MRes student-researching diagnostic delays. Patient Expert; Writer; Photographer; 🧘 Yogi; #hEDS #MALS #MCAS #POTS #LateDiagnosedAutism
Abby Turnwald (she/he... @PedsGCAbby
973 Followers 1K Following Pediatric genetic counselor, neurogenetics, advocate for the rare disease community, let’s talk about sibling health
helenthesocialist @helenhatessmear
6K Followers 6K Following Socialist, hates #corruption, #tories #centrists #liarstarmer #statemedia #wakeup scapegoating of minorities is a means of hiding real enemy #corbynwasright
113000000007 @rimk000000007
48 Followers 1K Following
ADITI® 🪔 @shopaditi
2K Followers 3K Following AdTech Girlie | Head of DSP Partnerships @seedtag | Prev @anzu @iponweb @tripleliftHQ @adroll | https://t.co/v2uG8F6OOs | MY CANDLE 🕯️ SHOP is LIVE! 🚀
Kathleen 'Kat' Dearin... @DandyWalkerInst
673 Followers 5K Following Director of Operations Frontier Housing, ACoM,former Council Member-CO, Certified Human Rights Consultant 🙌, American Legion & Proud Lion 🦁
Brendan Halverson @BrendanHalvers1
8 Followers 16 Following
Kim Ventarola @Kim_Ventarola
121 Followers 250 Following Wife, Mom of 2 beautiful boys, Special Educator, Advocate, Co-founder and President of the Malan Syndrome Foundation
Alok Tayi @aloktayi
3K Followers 749 Following Building a community to find & fund treatments for rare diseases w/ @VibeBio Also: @biotech2050pod
Sabrina Benoit | (she... @SabrinaB_design
12 Followers 48 Following Inclusive Design Graduate Student @OCAD #inclusive #design #EDI #accessibility
Simons Searchlight @s_searchlight
2K Followers 3K Following Accelerating research by collecting data/biosamples from ppl w/rare #genetic causes of #autism & other neurodev dis. Researchers can get data: https://t.co/kokQ7uLYWd
Leah @LeahEDSCN2A
963 Followers 1K Following Founder, Executive Director and Former President of the FamilieSCN2A Foundation. Mom and rare disease advocate of epilepsy and autism, SCN2A-related disorders.
Catalyst @CatalystForRare
855 Followers 275 Following We are committed to improving the lives of patients with rare diseases.
Cavernoma Survivor @CavernomaSurvi1
323 Followers 775 Following book & tea lover, mostly plant-based life form #Disabled #Ataxia Brainstem #StrokeSurvivor #Spoonie #BrainSurgery #HypertrophicOlivaryDegeneration
Effie Parks @OnceUponAGene
6K Followers 4K Following Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓
Neena Nizar @NeenaNizar
2K Followers 2K Following Founder & Executive Director of The Jansen's Foundation. KOL,TEDx Speaker, Educator, Change Leader, https://t.co/Ty1g3WHftT Opinions are my own
Global Genes @GlobalGenes
29K Followers 6K Following Empowering the Next Generation Rare Disease Advocate. Merged with RARE-X Dec. 2022. #CareAboutRare
David Fajgenbaum, MD @DavidFajgenbaum
12K Followers 3K Following @Penn physician-scientist-patient who 'cured thyself' | Advancing @CureCastleman + @EveryCure | National Bestseller #ChasingMyCure https://t.co/26OS13etrF
Stephanie Fischer @RarePOV
7K Followers 5K Following #Raredisease patient advocate & #stroke survivor.🦓 Member of @PARareDisease. Opinions are my own.
Luke Rosen @lukebrosen
2K Followers 424 Following Dad of two remarkable kids. Founder of https://t.co/GkrwXhfkoy & https://t.co/eWtcezWeJc. Works with families affected by neurological diseases & cancer. Firefighter. Baseball & hockey.
Marni Cartelli @Purrfectly_Rare
3K Followers 2K Following Rare Disease Patient, mom, & advocate. Danny's Dose Alliance Board Member. Know who you are & live a way you can be proud of.
Patient Worthy @PatientWorthy
8K Followers 7K Following We're a resource for engaging, informative content and rare patient news, well done.
FA Research Alliance @CureFA_org
3K Followers 598 Following FARA's mission is to marshal and focus the resources and relationships needed to treat & cure Friedreich's ataxia (FA). #CureFA
National Organization... @RareDiseases
40K Followers 3K Following #NORD has been the voice of the U.S. #RareDisease community for 40+ years strong. Official U.S. sponsor of #RareDiseaseDay. On Bluesky at @ https://t.co/D7PIT4k0Py
Tracy Dixon-Salazar @TracyDixonSalaz
3K Followers 934 Following Mom. Rare Disease & LGS Advocate. Neuroscientist. The largest most neglected healthcare resource, worldwide, is the patient. Executive Director @LGS_Foundation
Adam Johnson - DadVoc... @RareDiseaseDad
1K Followers 984 Following Dad w/#RareDisease | #Mito Advocate |🎙Host: #ParentsAsRare | Educator | Support | Kindness | Dad Jokes |#MentalHealthMatters | #BoiseState | ⚾️ @Cubs 🏈@49ers
Rare Disease Day @rarediseaseday
42K Followers 3K Following 29 February 2024 is Rare Disease Day. Raising awareness for patients, families and carers around the world that are affected by rare diseases. #RareDiseaseDay
National Ataxia Found... @NAF_Ataxia
3K Followers 666 Following Our mission is to accelerate the development of treatments and a cure while working to improve the lives of those living with Ataxia.
RARE Revolution Magaz... @RareRevolutionM
12K Followers 7K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Andra Stratton @livinlavidalopo
1K Followers 523 Following Co-Founder of Lipodystrophy United Program Associate for #RareAsOne @CZIScience. Always hungry. Sometimes funny. Opinions are my own.
EURORDIS-Rare Disease... @eurordis
32K Followers 1K Following An alliance of over 1,000 patient organisations working across borders and diseases to improve the lives of all people living with rare diseases.
Friedreich's Ataxia N... @Friedreichsatax
1K Followers 42 Following We are dedicated to sharing the latest news, research, and Friedreich’s ataxia patient perspectives.
KIF1A.ORG @KIF1A
1K Followers 590 Following We connect families affected by KIF1A and relentlessly work to accelerate research. We need to find treatment for this rare neurodegenerative disease. Fast.
Beacon for Rare Disea... @RareBeacon
12K Followers 10K Following Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. Previously known as Findacure.
Zach Wichter @zlwichter
2K Followers 2K Following Travel reporter and Cruising Altitude columnist @USATODAY. Formerly @nytimes, @thepointsguy & more. [email protected] ✡️🏳️🌈✈️🗒
Magic Mind @magicmind
9K Followers 99 Following The world’s first mental performance shot 🧠🪄 Your secret to a sharper mind & calm energy “Silicon Valley’s new morning elixir” -Forbes
James Beshara @jamesbeshara
35K Followers 665 Following angel investor (gusto, mercury, openai, clubhouse, bolt, alchemy, 50+ w/market cap of $100Bn+) | creator (@magicmind, @gobelowtheline, @tilt acq by @airbnb)
Biotech2050 Podcast @Biotech2050Pod
1K Followers 414 Following Biotech2050 Podcast is a think tank chronicling the disruptions changing the biotech industry over the next 50 years. Hosted by @rahulc and @aloktayi
Stanley Crooke, M.D.,... @DrStanleyCrooke
1K Followers 555 Following Founder and CEO of n-Lorem Foundation. Answering the challenge of treating patients with nano-rare diseases. Opinions are my own.
Alok Tayi @aloktayi
3K Followers 749 Following Building a community to find & fund treatments for rare diseases w/ @VibeBio Also: @biotech2050pod
Southwest Airlines @SouthwestAir
2.1M Followers 0 Following We run on #SouthwestHeart. Follow for more on the best Employees and Customers in the world. Book flights, explore careers, & get in touch at the link below.
LGS Foundation @LGS_Foundation
2K Followers 401 Following The LGS Foundation is dedicated to improving the lives of individuals impacted by LGS through advancing research, awareness, education, and family support.
Tania Simoncelli @TaniaSimoncelli
514 Followers 551 Following
Chan Zuckerberg Initi... @ChanZuckerberg
27K Followers 451 Following We are working at the intersection of AI and biology to advance science, build powerful technologies and transform health.
mHealth Times @mobihealthtimes
3K Followers 4K Following mHealth News & Editorial. Serve God by helping many people live healthier lives.
Noah Griffith @NoahGG01
905 Followers 505 Following AU Journalism grad 🎓🦅 | high school sports reporter for the Opelika Observer | blogger, adapted athlete & fighter of Friedreichs ataxia
Kendall Davis, MPH @KendallJD28
907 Followers 1K Following Rare Disease Patient Advocate. Lets spread awareness for the OVER 7,000 RARE DISEASES and those they impact. Together we are strong. Lets change the world!!
AVROBIO @avrobio
2K Followers 292 Following We are a clinical-stage lentiviral gene therapy company, powered by our plato® gene therapy platform. Our vision: bring personalized gene therapy to the world.
Anthony's Abilities @antable93
63 Followers 92 Following
BloodStream Media @BloodStrmMedia
1K Followers 449 Following Bringing education and inspiration to those living with rare and chronic diseases. 🩸
DisabilityArtsOnline @disabilityarts
19K Followers 3K Following Sharing Disability Arts and Culture with the world since 2004. Follow for our latest news, reviews, events and blogs. New job listings tweeted every Thursday.
Gay Grossman @GayGrossman
323 Followers 204 Following Founder of Rare Disease support group https://t.co/NjxJbAU9RJ and continually building relationships in the Rare Disease community.
Utah Trikes @UtahTrikes
954 Followers 129 Following Utah Trikes is the place to go to learn about recumbent trikes.
RARE-X @RARE_X_
1K Followers 203 Following PATIENTS' DATA POWERING PROGRESS - RARE-X is expected to become the largest data-sharing initiative focused on rare diseases. More to come.............
DISORDER: The Rare Di... @DisorderRare
906 Followers 206 Following Two rare disease dads took their films for Menkes Disease and USP7 & built them into a festival for all films on rare disease. https://t.co/Qjsl21HRH4
Joe DeRosa @joederosacomedy
80K Followers 1K Following “Can’t leave Rap alone, the game needs me.” comedian/writer/actor - proprietor of @joeyroseshard8 sandwich shop
Dave Attell @attell
421K Followers 418 Following Upcoming Dates: https://t.co/7c9wAcxa4c #HotCrossBuns now streaming on Netflix!
Gilbert Gottfried @RealGilbert
383K Followers 2K Following The official Twitter page for Gilbert Gottfried
Norm Macdonald @normmacdonald
1.1M Followers 719 Following This is my official twitter i like bananas. theyre yellow.
MDA Advocacy @MDA_Advocacy
2K Followers 343 Following MDA's Advocacy empowers the voice of the @MDAorg community & protects the interests of those we serve.
Muscular Dystrophy As... @MDAorg
21K Followers 2K Following MDA is the #1 voluntary health organization in the United States for people living with #MuscularDystrophy, #ALS, and related #neuromuscular diseases.
Benjamin Forred @SanfordBenF
394 Followers 135 Following #Science Enthusiast. #Biomed Researcher and Director of #Genetics & #Genomics and the @SanfordCoRDS #Registry at @sanfordresearch. #RareDisease #research
Blair Casey @blaircaseynola
801 Followers 182 Following Inspired by folks that are real and deserving of recognition because of their actions not their words.
AllStripes @_allstripes
3K Followers 1K Following Our mission is to unlock new treatments for people affected by rare disease.🚀
Michele Rhee @michelerhee
2K Followers 298 Following #RareDisease & #AYACSM / #AYA Cancer #PatientAdvocate| Board of @CostsOfCare | Overall enthusiastic person! | Tweets are my own.
Carrie Ostrea, MBA @RareDiseaseAdv
1K Followers 108 Following Little Miss Hannah's Mom #RareMom. Providing education & mentoring to #raredisease advocates. Comments and opinions are my own.
Humberto Maldonado @Humbert08231451
3 Followers 9 Following
☆ Stambii. ☆ @Stambii86
113 Followers 1K Following ◆ FA Worrier. ✌🏻 ◆ Stay Strong! 💪🏻 ◆ #FUFA ✊🏻 ◆ ALWAYS Smile! 🙂 🙃 😀 ◆
Jamie Cusick @JamieCusick1
37 Followers 153 Following Have Friedreich's Ataxia; republican; I believe n reincarnation/immortality of souls; fan of NYGiants, Yankees, Rangers, NJDevils. Love horror&suspense books.
World Duchenne Organi... @worldduchenne
3K Followers 977 Following Global organization to find a cure and viable treatment for those lives affected by dystrophinopathies: Duchenne and Becker Muscular Dystrophy. RT ≠ endorsement
WillCure @willcuremtm
138 Followers 330 Following We are going to cure X-Linked Myotubular Myopathy. Join us in our quest.
Solid Biosciences @Solid_Bio
2K Followers 206 Following Solid’s mandate is to improve the lives of patients living with devastating neuromuscular and cardiac diseases. #TogetherWeAreSolid
PTC Therapeutics @PTCBio
2K Followers 298 Following PTC is a patient-centered biopharmaceutical company focused on discovering, developing & commercializing medicine for patients with rare disease
Hawken Miller @HawkenMiller
668 Followers 1K Following Content strategist @CureDuchenne, fmr features writer @bionewsservices, contributor @LauncherWP | hawkenmiller at gmail dot com. 💗🎮♿✝
Kevin Bacon @kevinbacon
938K Followers 221 Following Trying to do what I can with what I’ve got @SixDegreesofKB
Shannon Burkoth @shannonburkoth
1K Followers 3K Following Narcolepsy & Rare Disease Advocate, Consultant & Public Speaker. Rising Voices of Narcolepsy. Views are my own. #REALnarcolepsy #MoreThanSleepyTrends for United States
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