John Walton Muscular Dystrophy Research Centre

jwmdrc.bsky.social

12 March 2026 17:41

We’re delighted to be at Muscular Dystrophy UK’s Birmingham Information Day on Sat 14 March — a free event for adults and parents of children with muscle‑wasting conditions. We’ll be representing JWMDRC and sharing the work of our Registries Team. Sign up here: bit.ly/4rj0CQM

John Walton Muscular Dystrophy Research Centre

jwmdrc.bsky.social

12 March 2026 17:32

Thrilled to announce our paper has been accepted in the Journal of Neuromuscular Disorders. This was a fantastic effort bringing the efforts of patient community, registry and researchers together to learn more about liver health in MTM-CNM patients bit.ly/4rKvfQd

Rare Disease Day Official

rarediseaseday.bsky.social

28 February 2026 11:31

🌍 It’s #RareDiseaseDay 2026! 💜 Today we stand with the 300 million people living with a rare disease. Together, we’re showing our colours, raising awareness, and inspiring change by talking about what equity means to us. 👉 Read more: https://go.rarediseaseday.org/NEWS

Rare Disease Day Official

rarediseaseday.bsky.social

24 February 2026 13:34

It’s not easy to describe our first ever in-person event in ONE word, but we can try! 🎬 The #RaisingYouthVoices2026 short film drops this #RareDiseaseDay. 👉 Subscribe to our YouTube to be the first to watch: https://go.rarediseaseday.org/YouTube 28|02|2026

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