John Walton Muscular Dystrophy Research Centre

John Walton Muscular Dystrophy Research Centre

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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  • 30 Oca 2025, 10:13
    🎉 Bluesky'e katıldı - İlk kullanıcı adı: @jwmdrc.bsky.social

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Feb 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

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#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

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🚨Today, February 28th, is Rare Disease Day! 🚨 Your voice matters! Join us in raising #myotonicDystrophy awareness! 💚🔗 Start Now: www.myotonic.org/rare-disease...

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ERDERA
28 February 2026 11:40

🌍 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

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Our 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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