Happy World FSHD day 2024! Let’s work together to find a cure. #FSHDDay #FSHD #MD #FSHDUK #WorldFSHDDay #awareness

FSHD swimmers - if you enjoy swimming and would like to take part in this study / project please contact the team on this flyer.

It has been three years since we launched FSHD UK, and today we are excited to announce the launch of our new website. Please visit fshdUK.com 🤩

FSHD UK Group would like to share our statement on the latest news regarding Fulcrum Therapeutics discontinuing the Stage 3 Losmapimod trial. Please read full details here: ir.fulcrumtx.com/news-releases/…

We are keen to share with you all that we were in attendance at the FSHD Europe AGM in France. We can reiterate the sentiment of FSHD Europe and Partners that it was very productive and successful event, with much collaboration and fruitful discussion.

Avidity Biosciences has begun enrollment of Cohort C of the Phase 1/2 FORTITUDE™ clinical trial. Visit bit.ly/4htbRm0 for more information about this exciting news! #CureFSHD

FSHD UK attended an amazing event at the 10 Year Anniversary of the John Walton Muscular Dystrophy Centre conference. We at FSHD UK are proud to have the support of many of the researchers, clinicians and fshd patient registry that were also in attendance.

There is a wonderful thing that happens when people align with a common purpose and goal. A strong team is formed. Photo of FSHD UK team at the JWMDRC Conference this past weekend.

Patient Engagement Day at the JWMDRC. A great day filled with information on clinical trials, research, advocacy and opportunity to register with UK FSHD Registry. Raj (chair/founder) of FSHD UK Charity presented our journey and plans for the future.

FSHD UK is delighted to share registration is open for the FSHD Connect Europe conference. We look forward to seeing you there.

FSHD UK is delighted to share the news: Avidity Biosciences Completes Enrolment in Biomarker Cohort in Phase 1/2 FORTITUDE Trial for Delpacibart Braxlosiran (del-brax).

As part of or continued efforts here FSHDUK to network and support research we are sharing the latest development and work by Yusuke Nishimura Funded by FSHD Society mcponline.org/article/S1535-…

Today we are attending the FSHD Society IRC 2025 - fascinating and interesting presentation by Prof.Julie Dumonceaux on mysostatin as a potential biomarker for FSHD. Prof Dumonceaux is also part of FSHK UK network #FSHD #FSHDResearch #CureFSHD #RareDiseaseResearch #Neuromuscular

Great initiative on aligning outcome meaures - much needed in FSHD. Look forward to more progress on this #fshdeurope #FSHD #FSHDResearch #CureFSHD #Neuromuscular #RareDiseaseResearch

IRC 2025, Nicol Voermans (Radboud) and Rajeshri Badiani present the 2025 International Standards of Care for FSHD. We encourage the entire FSHD community to own, use and continue to improve these standards on an on-going basis. #FSHD #2025InternationalResearchCongress

A fully packed agenda with 30+ presentations at the #IRC2025Conference in Amsterdam - attended by many of the FSHD UK team. Following on from Avidity Biosciences news this week, today Dr Checkland presented the top line results from the Randomised Phase 1/2 FORTITUDE trial.

Patient Connect 2025 in Amsterdam FSHD Connect 2025 - Marion Sellenet shows strength through Art. Bravo! FSHD Connect 2025 - Dr Belayew explains FSHD. Dr Belayew discovered the DUX4 gene! A breakthrough for the FSHD community! #CureFSHD #Neuromuscular #NeuromuscularResearch

Helen and Lucy - sharing updates on the new UK FSHD Registry Platform - at the Patient Connect - FSHD Europe - Amsterdam 2025

What an incredible weekend in Amsterdam. Here are some of the FSHD UK team at the IRC 2025, + Dr Statland (supported our MOVE+ study) joined us. Good presence of the UK at the IRC 2025 with everyone contributing at different presentations and talks! Bravo FSHD UK !