CureDuchenne @CureDuchenne
We are committed to improving the lives of those affected by Duchenne through accelerating research, improving care and empowering the community. cureduchenne.org Newport Beach, California Joined April 2009-
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If you have Duchenne and are considering driving or riding in a wheelchair-accessible vehicle, it is possible! While it can be a significant undertaking that requires careful planning and support, we're here to provide you with the resources you need! cureduchenne.org/blog/heres-how…
Special thanks to Jake and Sheryl Marrazzo for sharing their journey and invaluable insights on transitioning to adulthood with #duchenne. Your story lights the way for many families navigating similar paths. @mdnewstoday_ #adultswithdisabilities musculardystrophynews.com/transitioning-…
News from BioMarin Pharmaceutical Inc. We’re thrilled to share the latest updates on their ongoing clinical trials. 🔗 Learn more cureduchenne.org/wp-content/upl… #duchenne #DMD #clinicaltrials
Governor DeWine Announces Ohio First State in the Nation to Screen Newborn Babies for Duchenne Muscular Dystrophy governor.ohio.gov/wps/portal/gov… screen-newborn-babies-for-duchenne-muscular-dystrophy via @ohgov
Explore the lineup filled with inspirational speakers, the latest research updates, and engaging sessions designed to bring education, connection, and hope to the hashtag#Duchenne community. web.cvent.com/event/8ff259d6…
As an early funder of @EdgewiseTx we are pleased to share that Edgewise has reported positive two-year topline results from their ARCH open label trial in hashtag#Becker Muscular Dystrophy. #FuturesForAll #CureDuchenne #Duchenne #DMD cureduchenne.org/all-news/edgew…
It's not too late to join us for a for a complimentary dinner session in Pittsburgh tomorrow! Register here: bit.ly/3xD9CdK
Miami community comes together for @CureDuchenne, raising nearly $2.5M since 2021. Read at rarerevolutionmagazine.com/miami-communit… #PressRelease #Duchenne
Our team is heading to Long Island this weekend for the @CureDuchenne Family Workshop. We look forward to discussing ways to pave a positive path forward for the #Duchenne community. #raredisease
“We are seeing adults whose coverage is minimal to none and we’re able to get them back to the system. That’s one of our biggest achievements: helping people that were off the grid for so long because they couldn’t find anybody." - Dr. Diana Castro cureduchenne.org/general/revolu…
Join us for a session with ITF Therapeutics. Meet members of the ITF Therapeutics team to learn more about their organization and next steps to support the availability of DUVYZAT. Please register in advance: bit.ly/43Cx1YF
CureDuchenne Community Webinar | Update with ITF Therapeutics: Introducing DUVYZAT™ (givinostat) #FDA #Duchenne #CureDuchenne #DMD cureduchenne.org/event/webinar-…
Check out these scholarships, aimed at those with Duchenne and/or disabilities! cureduchenne.org/general/these-…
FDA Approves Duvyzat (givinostat) for Duchenne Treatment. Read the full press release here: #DMD #duchenne #duchennemusculardystrophy #FDA cureduchenne.org/all-news/fda-a…
PTC Therapeutics announced that, based on recent feedback from the FDA, by mid-year they plan to re-submit an NDA for Translarna (ataluren) for Duchenne caused by nonsense mutations: press release cureduchenne.org/research/ptc-t…
Join us for an exclusive adventure at @DiscoveryCove, offered only to attendees of the FUTURES annual conference hosted by CureDuchenne! 🐬 Learn more: web.cvent.com/event/8ff259d6…
Your power wheelchair or scooter helps you go between classes, keep up with your friends, and even stand. To make it most effective and truly make it yours, you’ll want to add extra accessories and add-ons. Browse the list! cureduchenne.org/general/16-bes…
In case you missed it! ✈️🚌🚂 Check out today's recording of Ask Me Anything: Traveling with Duchenne with Marissa Penrod, Adam Malone and Alan Chaulet. @allwheelsup cureduchenne.org/webinars/ask-m…
Our very own Chief Scientific Officer, Dr. Michael Kelly, shares his expert perspective with @biospace on the evolving landscape of Duchenne treatments and what data and decisions we can anticipate this year. Dive into the full article here: biospace.com/article/itf-ge…
AnnemiekeAartsma-Rus @oligogirl
3K Followers 486 Following Translating science from bench to bedside and from jargon to lay language
Matthew S. Alexander @Matt_Muscle_Guy
5K Followers 4K Following Geneticist, Skeletal Muscle, Drug development, Gene therapies. Non-coding RNA, and Zebrafish Aficionado. All tweets are my own. Instagram @thealexanderlab
Sarepta Therapeutics @Sarepta
5K Followers 62 Following Commercial-stage biopharma company focused on the discovery & development of precision genetic medicine to treat rare neuromuscular diseases. https://t.co/HFP4txOCxe
Terri Ellsworth @TerriEllsworth
2K Followers 2K Following Duchenne Advocate/Rare Disease Activist Mom, Designing Mom-Creating awareness & advocating for approval of safe & effective drugs. Words are always my own.
Duchenne UK @DuchenneUK
5K Followers 953 Following Duchenne UK has one clear aim – to end Duchenne, a devastating muscle-wasting disease. We are the leading Duchenne muscular dystrophy charity in the UK.
World Duchenne Organi.. @worldduchenne
3K Followers 1K Following Global organization to find a cure and viable treatment for those lives affected by dystrophinopathies: Duchenne and Becker Muscular Dystrophy. RT ≠ endorsement
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.
Muscular Dystrophy UK @MDUK_News
18K Followers 3K Following We connect a community of over 110,000 people living with muscle wasting and weakening conditions. Together we are stronger. Join us. Our #MusclesMatter.
Joining Jack @alljoinjack
63K Followers 2K Following We are joining Jack in the fight to find a cure for duchenne muscular dystrophy. Will you?
Defeat Duchenne Canad.. @defeatduchenne
1K Followers 795 Following Defeat Duchenne Canada is the country’s only national charity dedicated to ending Duchenne muscular dystrophy.
WMS @WorldMuscleSoc
2K Followers 663 Following We invite you to the 28th International Annual Congress of the World Muscle Society in 2023. This is the premier annual Congress on #neuromuscular disorders.
Parent Project Muscul.. @ParentProjectMD
7K Followers 1K Following Let's fight for every future. #PPMDeveryfuture #EndDuchenne
Action Duchenne @ActionDuchenne
6K Followers 1K Following Our vision: a world where lives are no longer limited by Duchenne muscular dystrophy. Our objectives: research for all, science education, world-class support.
Lesley @Weggster
3K Followers 3K Following Seem to have lost 3 or 4 decades judging by my playlist. Music junkie. End Duchenne Muscular Dystrophy. #MusicTwitter #ActionForAshley. #HollywoodGlitterBall
Beacon for Rare Disea.. @RareBeacon
12K Followers 11K 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.
TREAT-NMD @TREAT_NMD
4K Followers 565 Following Advancing diagnosis, care and treatment for those living with neuromuscular diseases around the world
DMD Aileleri Derneği @Dmd_aileleri
3K Followers 48 Following Nadir hastalıklar arasında yer alan Duchenne Musküler Distrofisi (DMD), çocukluktan itibaren belirti veren ilerleyici bir kas erimesi hastalığıdır.
Rare Disease Day @rarediseaseday
44K 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
Shelley Simmonds FRSA.. @Shelley_Simmo
4K Followers 5K Following Duchenne Mum | Parent Carer | Disability Rights & Rare Disease Advocate | Accessibility & Inclusion Campaigner | Healthcare Equality & Ethics Enthusiast
Jordi Díaz-Manera @querques2000
773 Followers 968 Following Professor of Neuromuscular Diseases at Newcastle University @jwmdrc. Passionate about clinical and basic research, but also about wine, sport, music and books.
Jaimy M @JaimeSa71320239
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hassan @Hpopi1Hassan
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Sportify-GlutenFree F.. @SportifyG
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Sudhir Sharma @SudhirSharmaSDS
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Mehmet veysi Öncel @Flankesbey1774
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Star Olivia @UsAllyson94057
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Alan Carver @GrootMonkeys
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CADForg @CadForg
116 Followers 232 Following Cold Agglutinin Disease Foundation Inc, CAD Foundation was created in 2019 as a non-profit, (501)(c)(3) corporation. It is dedicated to the advancement of CAD
Z Czerwony Balonem Pr.. @Patryklyzinski
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falcon @bos46476740
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Smidt Heart Institute.. @SmidtHeart
826 Followers 513 Following Smidt Heart Institute @CedarsSinai #1 in California #2 in the nation for Cardiology, Heart & Vascular Surgery Ranked by U.S. News & World Report
ElMallah Lab @ElMallah_Lab
5 Followers 22 Following Duke University. Duke Childrens Hospital. AAV gene therapy. Novel therapies for respiratory insufficiency in neuromuscular disorders.
kirubakaran27 @kirubakaran2702
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BiopharmaBytes @BiopharmaBytes
14 Followers 156 Following Biopharma Bytes stands at the forefront of transforming how professionals digest the latest developments in biopharmaceuticals - one byte at a time.
Jose Antonio Oliva B @joseoliva_71
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Debby Brown @grammybrown01
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Marie Brace @MarieBrace85187
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Shawen Bradshaw @ShawenBradshaw
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Amine @amynaljzay26451
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🧬 Dr.Arun Shastry .. @arunshas
287 Followers 285 Following Chief Scientific Officer Dystrophy Annihilation Research Trust Hanugen Therapeutics
Ajay Malik @AjayMalik497034
1 Followers 17 Following
iPain Foundation Rese.. @iPain_Research
3K Followers 2K Following Supporting @iPainOfficial & @powerofpain Research Projects #NERVEmber
Mohamed Ali @ma8535847
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Anna @AnnaMiki23
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Glendalee deRuiter @MGMdeRuiter77
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Micha Breakstone 🇮.. @MichaBreakstone
876 Followers 673 Following CEO/Founder @ https://t.co/mPei80rB2G (previously co-founder @chorus_ai) • Perennial entrepreneur • MSc Math, PhD Cog. Sci. • Husband, father • Aspiring novelist
cillianboushel @cillianbou36694
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Ms @mumbled15
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Sarah Kasner @rahdevries
92 Followers 123 Following mom, step-mom, wife, best youngest daughter, sister, employee, yogi, runner
the master @pablo_arias_s
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SLU Nephrons @slunephrons
4K Followers 3K Following Saint Louis University Nephrology Division offers state-of-the-art training in #InterventionalNephrology, CKD care, dialysis, #transplantation & #LivingDonation
NeurologyLive® @neurology_live
9K Followers 675 Following Delivering healthcare professionals treating neurological diseases quality and relevant information to help achieve the best patient care possible. #MindMoments
Jarosław Meyer-Szary @jmeyerszary
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RxDataWatch @RxDataWatch
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BB @BB4009601279216
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TheOriginalGlensky @TheOGGlensky
59 Followers 228 Following Streamer/Content Creator I'm a 26 yr old guy that likes to game and hang out with viewers. Follow me here to watch me Live! https://t.co/qg2LyrqwoQ
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Lancaster Films @lancasterfilmz
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Margarita Saenz, MD @MargaSaenzMD
232 Followers 546 Following Clinical and Biochemical Geneticist, Child Advocate, looking to support underrepresented populations in receiving and providing health care, views are my own
رشاد ادهم @rshad22230
34 Followers 1K Following
Heather McKenzie @hmac8
9 Followers 29 Following Senior editor and writer @biospace|The Weekly podcast guest| animal advocate|baseball nut #biopharma #healthcare #raredisease #biotech
Ömer Doğan @malido4147
19 Followers 154 Following
❤️citizen Macca @P15pm
365 Followers 3K Following No turning back, no giving in . originally from Acton west London former station assistant with London Underground now a care giver https://t.co/3PFF5oDm87
Leona Filis @FilisLeona58325
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ParParagon_ @ParagonPar86988
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AnnemiekeAartsma-Rus @oligogirl
3K Followers 486 Following Translating science from bench to bedside and from jargon to lay language
Matthew S. Alexander @Matt_Muscle_Guy
5K Followers 4K Following Geneticist, Skeletal Muscle, Drug development, Gene therapies. Non-coding RNA, and Zebrafish Aficionado. All tweets are my own. Instagram @thealexanderlab
Sarepta Therapeutics @Sarepta
5K Followers 62 Following Commercial-stage biopharma company focused on the discovery & development of precision genetic medicine to treat rare neuromuscular diseases. https://t.co/HFP4txOCxe
Terri Ellsworth @TerriEllsworth
2K Followers 2K Following Duchenne Advocate/Rare Disease Activist Mom, Designing Mom-Creating awareness & advocating for approval of safe & effective drugs. Words are always my own.
Duchenne UK @DuchenneUK
5K Followers 953 Following Duchenne UK has one clear aim – to end Duchenne, a devastating muscle-wasting disease. We are the leading Duchenne muscular dystrophy charity in the UK.
World Duchenne Organi.. @worldduchenne
3K Followers 1K Following Global organization to find a cure and viable treatment for those lives affected by dystrophinopathies: Duchenne and Becker Muscular Dystrophy. RT ≠ endorsement
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.
Muscular Dystrophy UK @MDUK_News
18K Followers 3K Following We connect a community of over 110,000 people living with muscle wasting and weakening conditions. Together we are stronger. Join us. Our #MusclesMatter.
Muscular Dystrophy Ne.. @mdnewstoday_
928 Followers 28 Following We exist to bring you science, research and clinical news about Muscular Dystrophy. We are a free digital publication dedicated to the patient community.
Joining Jack @alljoinjack
63K Followers 2K Following We are joining Jack in the fight to find a cure for duchenne muscular dystrophy. Will you?
Defeat Duchenne Canad.. @defeatduchenne
1K Followers 795 Following Defeat Duchenne Canada is the country’s only national charity dedicated to ending Duchenne muscular dystrophy.
WMS @WorldMuscleSoc
2K Followers 663 Following We invite you to the 28th International Annual Congress of the World Muscle Society in 2023. This is the premier annual Congress on #neuromuscular disorders.
Action Duchenne @ActionDuchenne
6K Followers 1K Following Our vision: a world where lives are no longer limited by Duchenne muscular dystrophy. Our objectives: research for all, science education, world-class support.
EURORDIS-Rare Disease.. @eurordis
32K Followers 2K 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.
TREAT-NMD @TREAT_NMD
4K Followers 565 Following Advancing diagnosis, care and treatment for those living with neuromuscular diseases around the world
Rare Disease Day @rarediseaseday
44K 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
Shelley Simmonds FRSA.. @Shelley_Simmo
4K Followers 5K Following Duchenne Mum | Parent Carer | Disability Rights & Rare Disease Advocate | Accessibility & Inclusion Campaigner | Healthcare Equality & Ethics Enthusiast
RARE Revolution Magaz.. @RareRevolutionM
12K Followers 8K Following Digital magazine giving a voice to those affected by rare conditions and the charities that support them. Contact us: [email protected]
Dyne Therapeutics @Dyne_tx
1K Followers 323 Following Advancing life-transforming therapies for serious muscle diseases. Community guidelines: https://t.co/0XslT2HWqg
Global Genes @GlobalGenes
30K Followers 6K Following Empowering the Next Generation Rare Disease Advocate Merged with RARE-X Dec. 2022. #CareAboutRare
Stichting Duchenne @duchennepp
1K Followers 952 Following Duchenne Parent Project vecht voor genezing of behandeling van spierziekte Duchenne, betere zorg&hulpmiddelen! Doe mee via https://t.co/rFyUxquTaC NL15INGB0000818818
Edgewise Therapeutics @EdgewiseTx
375 Followers 43 Following On a mission to improve the lives of people facing serious muscle disease.
Pharma & Life Science.. @pharminews
64K Followers 432 Following News from across the pharmaceutical and biotech industry from PharmiWeb https://t.co/ea1b58MZYg
FiercePharma @FiercePharma
98K Followers 485 Following Pharma’s go-to destination for news & trends shaping approved drugs. Delivering news, revealing insights straight to your inbox.
Russell Rogers, Ph.D. @rrogerslab
136 Followers 324 Following Assistant Professor, Smidt Heart Institute @SmidtHeart @CedarsSinai | Views are my own
President Biden @POTUS
34.8M Followers 5 Following 46th President of the United States, husband to @FLOTUS, proud dad & pop. Tweets may be archived: https://t.co/HDhBZBkKpU Text me: (302) 404-0880
Richard Halkett @RichardHalkett
464 Followers 649 Following Oakham born, Wigan bred, LA living. Chief Customer Officer at SambaNova Systems. Passionate about life, wife, sons, history, tech, friends & politics.
This Old House @ThisOldHouse
226K Followers 713 Following Providing trusted home improvement information and expert advice. Season 45 now airing on @PBS and @TheRokuChannel. Download our free streaming app!
Duchenne Data Foundat.. @DuchenneDF
715 Followers 452 Following Bringing data to life to improve the world of dystrophinopathies
NS Pharma @NSPharmaInc
267 Followers 41 Following Dedicated to improving patient outcomes in #Duchenne muscular dystrophy, eosinophilic granulomatosis with polyangiitis (#EGPA) and other #rarediseases.
Jett Foundation @JettFoundation
2K Followers 1K Following Empowering families. Fighting Duchenne muscular dystrophy. #FightDMDTogether
Martin Lehr @MLehrPHL
285 Followers 254 Following CEO at @Context_Tx, $CNTX. BoD Praesidia BioTherapeutics and @CureDuchenne. Philly biotech champion.
WebMD @WebMD
3.1M Followers 410 Following WebMD and our medical team bring you the most trustworthy and timely health news and information.
Christopher Wood MBE @flyingdisabled
4K Followers 5K Following Aviation Access Consultant: Lobbying & Campaigning for wheelchair users to fly with dignity & safety 1/3 of https://t.co/14SHQt0YNf #RightsOnFlights
Hospital for Special .. @HSpecialSurgery
47K Followers 680 Following Hospital for Special Surgery is ranked #1 in the nation for orthopedics and #2 for rheumatology. To make an appt, call 888.720.1982 https://t.co/sl2XZihXnJ
Foundation for the Na.. @FNIH_Org
5K Followers 2K Following The Foundation for the National Institutes of Health (FNIH) builds and nurtures scientific partnerships to make important health discoveries possible.
REGENXBIO @REGENXBIO
2K Followers 176 Following REGENXBIO is dedicated to transforming the lives of people suffering from severe diseases with significant unmet medical need through our NAV® gene therapy.
Alan Chaulet ♿✈ @AlanChaulet
1K Followers 5K Following @allwheelsup VP and Founding Board Member | @ParentProjectMD PAAC I #BentleyU Grad I DMD and Disability Advocate | All Views My Own |
Avidity Biosciences, .. @aviditybio
541 Followers 78 Following Avidity Biosciences is pioneering a new class of oligonucleotide-based therapies to address the unmet needs of the rare disease community.
FDA Biologics @FDACBER
24K Followers 215 Following Latest information from the Center for Biologics Evaluation and Research. Contact us at 1-800-835-4709 or [email protected]. http://t.co/5Fo6rzyhYQ
Christopher Perry PhD @ChrisPerryMito
3K Followers 989 Following Researcher/educator of muscle disorders and the metabolic basis of muscle fitness. Translating mitochondrial bioenergetics and redox biology to health/disease.
Vineeth Jaison @JaisonVineeth
728 Followers 1K Following Neurologist, Neuromuscular, Musician, Husband, Teacher, Motivator
Cell&Gene @_CellandGene
356 Followers 19 Following
All Wheels Up ♿✈ @allwheelsup
5K Followers 5K Following Working to increase awareness for safer and more dignified accessible travel through research and advocacy. Text FLY to 707070 to Donate
Cali-RAD Fest @caliradfest
11 Followers 10 Following 09.02.23 | 3PM-10PM | THE BEACH HOUSE | MISSION BEACH, CA Benefit event in support of CureDuchenne TICKETS ARE FREE! Please donate if able 🙏
H-E-B @HEB
297K Followers 225 Following Official handle of H-E-B. Follow us for the latest from Texas’ favorite grocery store.
Code Biotherapeutics @CodeBioTx
127 Followers 398 Following Code Bio is developing transformational, non-viral, genetic medicines to treat and potentially cure serious and life-threatening diseases.
Rare Disease Advisor @RareDisease_Adv
5K Followers 1K Following Trusted knowledge base of practical information and resources focused on treating and diagnosing #RareDisease.
Nationwide Children's.. @nationwidekids
38K Followers 8K Following Nationwide Children's Hospital, one of America's largest pediatric hospitals and an international leader in #research. A follow does not equal endorsement.
BioProcess Intl. @BioProcessIntl
4K Followers 1K Following Delivering the most educational and applicable scientific information to the biopharmacetucal manufacturing industry since 2003. Full archives online - FREE.
Authority Magazine @AuthorityMgzine
11K Followers 12K Following In-depth Interviews with Authorities in Pop Culture, Business, Tech, Wellness, & Social Impact. All of our storylines can be seen here https://t.co/RnGNVh3aPs
KXAN News @KXAN_News
253K Followers 2K Following In-depth and investigative updates from the KXAN newsdesk all day and night. Follow us on Instagram & TikTok: @kxan_news
Austin Statesman @statesman
338K Followers 17K Following The Austin American-Statesman is the leading source of daily news for Austin, Texas. Support local news and become a subscriber: https://t.co/M2w6phSoda
Brittany Ford @Bfordtv
2K Followers 530 Following TV News Reporter. Sunset lover. Dog mom. San Diego Native. #Aztecforlife #NABJ Instagram: brittanyfordtv
Nicole Villalpando @nicvillalpando
1K Followers 2K Following Nicole Villalpando writes about health for the Statesman.
Brunson Fan Club @BrunsonFanClub
237 Followers 188 Following Official Fan Club of NY Knicks #11 Jalen Brunson. #MacIrvinFire #PatriotPride #NovaNation @dallasmavs @nyknicks
MassBioEd @MassBioEd
4K Followers 1K Following Our mission is to build and sustain a talented and diverse life sciences workforce.
Prime Video @PrimeVideo
3.3M Followers 941 Following Good luck out there! @falloutonprime is now streaming.
Vertex Pharmaceutical.. @VertexPharma
72K Followers 89 Following The official channel for Vertex Pharmaceuticals. https://t.co/RRKBue0r0B
David Jorgensen @BassReelz
463 Followers 1K Following Dad of 3, Geospatial Analyst, looking for a cure for Duchenne Muscular Dystrophy. Usually rather be fishing.
DeWayne Townsend @Dr_dtown
218 Followers 518 Following Associate Professor at the University of Minnesota. Researching broken hearts and how to fix them.
🤍 cheeks pink in the twinkling lights 🤍 ✍️: @JoshKurp / @UPROXX
.@taylorswift13’s ‘The Tortured Poets Department’ isn’t the breakup album you were expecting — #TTPD is much better. Read the full review below ⬇️. ✏️: @JoshKurp uproxx.com/pop/taylor-swi…
When I was writing the Fortnight music video, I wanted to show you the worlds I saw in my head that served as the backdrop for making this music. Pretty much everything in it is a metaphor or a reference to one corner of the album or another. For me, this video turned out to be…
It was a #PulpFiction family reunion! 🥹 #SamuelLJackson, #UmaThurman, #JohnTravolta, and #HarveyKeitel reunite for the 30th anniversary.
It’s a 2am surprise: The Tortured Poets Department is a secret DOUBLE album. ✌️ I’d written so much tortured poetry in the past 2 years and wanted to share it all with you, so here’s the second installment of TTPD: The Anthology. 15 extra songs. And now the story isn’t mine…
Sheila's survey last August asked the muscle wasting community about fashion and accessibility, revealing design insights and barriers to shopping. Now, she's crafting workshops for designers: shorturl.at/aLMQR
The term #Gaslighting is well known in society, but the relatively new term of #MedicalGaslighting is only more recently being acknowledged. Read more about the lived experience of gaslighting - the female perspective, here: bit.ly/LivedExperienc… #WomenInRARE @AlexionPharma
Miami community comes together for @CureDuchenne, raising nearly $2.5M since 2021. Read at rarerevolutionmagazine.com/miami-communit… #PressRelease #Duchenne
Our team is heading to Long Island this weekend for the @CureDuchenne Family Workshop. We look forward to discussing ways to pave a positive path forward for the #Duchenne community. #raredisease
A new California bill would give employees the right to ignore calls or texts from their boss, as long as it's after hours. 📵 "The right to disconnect" bill mandates employers to clearly outline working hours and guarantees workers uninterrupted personal and family time outside…
On April 5, our Chief Scientific Officer, Oxana Beskrovnaya, will present, “TfR-Fab conjugated oligos for muscle delivery” at the Delivery of Nucleic Acid Therapeutics II Conference. Learn more: bit.ly/3vBfe7q
Shouting out Jack & Friends 2024 talent, Ray Wylie Hubbard! We can't wait to have this acclaimed singer-songwriter at our event this year. Check out Ray's top 5 songs on Spotify here: spoti.fi/4auNYWW 🎶
Yesterday, the oral drug for the treatment of Duchenne muscular dystrophy (DMD), Duvyzat (also known as givinostat), was approved by the FDA (U.S. Food and Drug Administration) for use in boys aged 6 and older in the United States. Read more here: shorturl.at/dDHV7
#ICYMI: @MDAorg & all #neuromuscular community advocates may submit comments to DOT to share your air travel stories and what a more #AccessibleAirTravel experience would mean for you and your loved ones. Ready to submit your comments? More info here: votervoice.net/MDA/Campaigns/…
#Neuromuscular community advocates can send personalized comments to @USDOT expressing how the newest #AccessibleAirTravel proposal would improve your flying experience. Submit comments by 5.13.2024. We will share reminders about the comment process! votervoice.net/MDA/Campaigns/…
Michael Keaton, Jenna Ortega, and Winona Ryder star in the first teaser trailer for #BeetlejuiceBeetlejuice - in theaters September 6.
Krishan says, “I had heard about MDUK’s Free Will service, so I completed the online form on their website to kick off the process". Making a Will doesn’t have to be a complicated process, and it doesn’t need to cost you anything. Contact us today.
Happy Friday! I hope something wonderful happens to you today. 🖤
March 9: CureDuchenne to Host “Champions in Miami” Event bit.ly/3TrErKP #DMD #DuchenneMuscularDystrophy #MuscularDystrophy @CureDuchenne
#MDA once again hosted the annual gathering of the Neuromuscular Advocacy Collaborative at the #MDAconference with MDA’s Vice President of Public Policy & Advocacy, @PMelmeyer. The meeting brought together leaders from 20+ neuromuscular advocacy organizations. @MDA_Advocacy
They want to save the lives of their boys and others who suffer from Duchenne muscular dystrophy. Many with the disease lose their lives in their late 20s. And, that's why the Finazzo family works so hard to alter fate. cbsnews.com/miami/news/sou…
Today is #RareDiseaseDay. It brings much-needed awareness to the 300 million of us around the world living with a rare disease. These are the over 6,000 diseases affecting fewer than 200,000 people in the US. 25-30 million Americans are affected by one
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