jwmdrc.bsky.social
Performing world-class translational research to bring diagnosis, care and therapy to people with neuromuscular disease
👤 Joined on 30 January 2025
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@jwmdrc.bsky.socialFeb 28 is Rare Disease Day There are >6000 rare diseases affecting >300 million people, incl Duchenne (DMD), Myotonic (DM) & Facioscapulohumeral (FSHD) muscular dystrophies & Motor Neuron Disease (MND) that the CMR studies. Today we let our bright colors shine to raise awareness
Show Post#apaperaday Duchenne Parent Onlus themed from Rome for the annual meeting on Duchenne & Becker on rare disease day! 🤗Today a case report in Pediatrics by Drakou et al on a Duchenne patient with liver injury after elevidys treatment with a suggestion for earlier detection.DOI 10.1542/peds.2025-074192
Show Post🚨Today, February 28th, is Rare Disease Day! 🚨 Your voice matters! Join us in raising #myotonicDystrophy awareness! 💚🔗 Start Now: www.myotonic.org/rare-disease...
Show Post🌍 Today is #RareDiseaseDay! ERDERA, the European Rare Diseases Research Alliance, joins the campaign to raise awareness for the 300M people living with a rare disease, and advocate for better care, research, and collaboration 🚀 #RareDiseases #Advocacy #EUHealth #EUInnovation
Show PostOur national and international #neuromuscular patient registries are proud to support #RareDiseaseDay! Learn more about our work at jwmdrc.org/networking/registries #LightUpForRare #ShareYourColours
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