NEWS: The CureLGMD2i Foundation has been awarded an Muscular Dystrophy Association Advocacy Collaboration Grant for Collaborative Advocacy Expansion Program. We are committed to enhancing the lives of those with LGMD2I/R9 through this work. Read more: mda.org/press-releases…

"Strong Together, " Connecting for a Cure Documentary, featuring the story of three sisters, Cerys, Cadi and Beca, all living with LGMD2I/R9 muscular dystrophy. youtube.com/watch?v=hJsJhn…

Check out this sneak preview of CureLGMD2i documentary, “Growing up with #LGMD”, that will air on Friday, 2/28 for #RareDiseaseDay2025. Thank you to everyone for sharing their emotional stories of how their lives have been impacted by LGMD. #CureLGMD

Thank you to the 11 @curelgmd2i Ambassadors for sharing their stories of hope during #RareDiseaseWeek 2025! We are working tirelessly to turn your hopes and dreams of a better future into a reality. vimeo.com/1059753158?sha… #LGMD #CureLGMD #RareDiseaseDay2025 #RDD #ShowYourStripes

Funding for research is the very foundation of developing drugs and therapies to treat rare diseases. It is vital that we let our elected officials know how important this is. #AloneWeAreRare #TogetherWeAreStrong #LGMD #curelgmd2i #RareDiseaseDay2025 #RDDay #ShowYourStripes

We’re proud to present “Growing up with LGMD”, a powerful documentary featuring Sophie, Brooklyn, & Sammy, who live with Limb-Girdle Muscular Dystrophies (LGMDs). Individuals living with LGMDs experience progressive muscle degeneration and damage, and eventual loss of functional

"Thank you for sharing our posts! Sign up to our newsletter to keep up to date with The #LilyFoundation news and events: thelilyfoundation.org.uk/contact/ Follow our social media channels to learn more about #mitochondrialdisease #raredisease #mitoonthemap #mitoaware @4LilyFoundation"

Rare Disease Day, Let's ensure funding for research continues! #AloneWeAreRare #TogetherWeAreStrong #LGMD #CureLGMD #RareDiseaseDay2025 #RDDay

I'm hopeful for treatment that restores muscle strength and allows me to do simple things again without struggling. #AloneWeAreRare #TogetherWeAreStrong #LGMD #CureLGMD #RareDiseaseDay2025 #RDDay

Thank you for supporting our cause and for your partnership!

🚨 There’s still time to apply for the TREAT-NMD® LGMD Masterclass! 🚨 Are you a healthcare professional looking to deepen your expertise in LGMD? Join us in Montreal, Canada, on April 24-25, 2025, for a two-day immersive Masterclass featuring expert-led sessions, case studies,

#Congress is considering cutting critical funding to #NIH and #FDA, two institutions essential for researching and approving new #RareDisease treatments. Ask your representatives to protect this funding, here: rarediseases.org/driving-policy… With less than 5% of #RareDiseases having

🚨 Spaces Still Available! 🚨 Are you a healthcare professional based in North America? Don’t miss your chance to join the TREAT-NMD® LGMD Masterclass in Montreal, Canada on April 24–25, 2025! 📅 Date: April 24–25, 2025 📍 Location: Montreal, Canada This expert-led event will

Discover POD-NMD: Your Go-To Resource for Neuromuscular Care! POD-NMD provides specialist online resources for neuromuscular physiotherapists & occupational therapists, as well as families, individuals with neuromuscular conditions, and industry professionals. What’s available?

Atamyo completes the dose-finding study in Limb-Girdle Muscular Dystrophy Type R9 (LGMD-R9) and obtains US Rare Pediatric Disease Designation for ATA-100 atamyo.com/press-releases…

The Highly Specialised Service for rare neuromuscular disorders in Newcastle is organising an info day for people living with LGMD, in person or remotely. This will be a mixture of talks from experts in research, clinical care, and interactive workshops. bit.ly/3RBg8YU

The rare disease community is starting a new week facing a significantly different reality. More than 20,000 federal roles have been eliminated, impacting agencies with direct impact on our rare community. Read full news post here: bit.ly/4cnrgCf 𝗧𝗵𝗲𝗿𝗲 𝗶𝘀 𝗻𝗼

Celebrating 15 years! We need your help: Support the next generation of gene editing treatments. Donate $15 (or more) today for the 15th year of CureLGMD2I (R9) Foundation: bit.ly/4dl6gwv