Fantastic turnout for today's #MyotonicDystrophy awareness day, and lots of interest in signing up to the registry! Learn more about how our team support #NMD patient and research communities by visiting our website JWMDRC.org/networking/registries
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The @jwmdrc.bsky.social national patient registries for #FSHD and #MyotonicDystrophy are proud to support #RareDiseaseDay!

Our work to help advance #neuromuscular research is not possible without pioneering patients, parents & families sharing their health data - a huge ⭐️THANK YOU⭐️ to you all! 👏🏅📝

Excited to see #FSHDEurope and @fshdsociety.bsky.social announce the first FSHD Connect Europe meeting will be held this summer! This patient-focussed event should be a great opportunity to network with other #FSHD families, researchers and clinicians.

🔎 fshd-europe.info/fshd-connect...

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Some really interesting and informative presentations today from Prof Giorgio Tasca, Emma Robinson, Raj Badiani and Jose Verdu Diaz (pictured below) among many others! #FSHDEngagementDayNcl

We are supporting the #FSHD Awareness Day in Newcastle today, learn more about the national registry for patients here: bit.ly/ukfshdreg