One week to go until the rarest day of the year! 🦓 It's not too early to #ShowYourStripes and spread the word about #RareDiseaseDay. Download NORD's social media toolkit, lawn signs, and more and post your photos and stories with the hashtag! bit.ly/49BBMmQ

In today's community story ahead of #RareDiseaseDay, Sareena shares the obstacles she has faced since birth due to her #FactorVIIDeficiency diagnosis, and how the support of others has helped her lead a full life despite them: bit.ly/3OTYui7 #FactorVII #ShowYourStripes

In honor of Rare Disease Week this week, here’s a special “thank you” to all those people who support us and walk with us. Enjoy! Spotify: bit.ly/3IfgBeF Apple: bit.ly/48rpMDH #rarediseaseweek #rarediseaseawareness #duchenne

Capricor announces upcoming Type-B meeting with the FDA to discuss commercial manufacturing planning with an aim to expedite BLA pathway for CAP-1002 in Duchenne Muscular Dystrophy #CAPR #DMD #CAP1002 #FDA >>>Click the link to read the full press release>>>bit.ly/3Tf249p

Unlocking expert care for rare diseases, TREAT-NMD advocates for skilled physiotherapy. Join POD-NMD for free resources and e-learning courses. Together, let's pave the way for equitable access! #RareDiseaseDay #TREATNMD #HealthEquity #Physiotherapy #RareDiseaseAwareness

Did you know this #RareDisease fact? Individually, rare diseases are rare, but altogether they are not. Learn more and get involved in tomorrow's #RareDiseaseDay festivities: bit.ly/2BrULms

95% of #RareDiseases have no FDA-approved treatment, resulting in many patients using prescription drugs off-label. The bipartisan #PROTECTAct introduced by Rep. Doris Matsui, Dr. Neal Dunn, Rep. Mike Thompson & Rep. Mike Kelly makes it easier for rare patients to get coverage for treatments.

In honor of #RareDiseaseDay2024 we want to recognize the important progress on genomics to improve the lives of patients with rare diseases! Learn more about the Dollars and Sense of genomics testing bit.ly/4bXi9HS Genome Canada Dr. Deborah A Marshall Research Team Francois Bernier Care4Rare Canada

“Clearly the role of patients and patient advocates in rare disease has changed fundamentally over the last 10-15 years” -Charlene Son Rigby Tune in live: youtube.com/watch?v=uG43oL… #RareDiseaseForum #RareDisease #RareDiseaseWeek #CareAboutRare

🚨 IT'S RARE DISEASE DAY GLOBALLY! 🚨 Join us marking #RareDiseaseDay 2024! Spread awareness, share stories, and support those living with rare diseases. Together, we make a lasting impact! #ShareYourColours

Today is Rare Disease Day! TREAT-NMD supports the global movement, advocating for equity and illuminating landmarks to raise awareness. Join us in making a difference! 🌈 #RareDiseaseDay #TREATNMD #RareDiseases #HopeAndSupport

Today is Rare Disease Day. But, EVERY DAY is rare disease day for over 30 million Americans (300 million globally). That actually doesn't feel so rare. The science matters. The cures matter. The kindness matters. Because every single day is Rare Disease Day.

Come check out our Poster at 2024 Northwest SPOR Collaborative Forum. #2024NWSPOR - via #Whova event app whova.com/portal/webapp/…

Check out my latest article: AI Revolution: From Sci-Fi to Scalpel - How Artificial Intelligence is Transforming Healthcare linkedin.com/pulse/ai-revol… via LinkedIn

Do you remember when you joined X? I do! #MyXAnniversary

The FDA has given the green light for Myogenica to start a clinical trial testing its stem cell therapy MyoPAXon in people with DMD. buff.ly/3Yv5nMm #MuscularDystrophyNews #MuscularDystrophy

Check out my latest article: Decentralized Trials: A Lifeline for Rare Disease Drug Development linkedin.com/pulse/decentra… via LinkedIn

#WDAD24#DMD#BMD#Raredisease