Now for our big news... I'm delighted to announce that the UK FSHD Patient Registry has now 🌟 RELAUNCHED 🌟 onto our new bespoke registry platform, with improved questionnaires and features!

Visit our website to learn more and sign up today!

👀 www.fshd-registry.org.uk 👀

#FSHD #WorldFSHDday

We were fortunate to attend the @fshdsociety.bsky.social International Research Congress and FSHD Europe Patient Connect meetings last week.

These fantastic events brought together the FSHD community across Europe to make new connections and share research advancements #WorldFSHDday

🍊 Today is World FSHD Day!

📅 Held on June 20th to raise public awareness of #FSHD

🧬 Our Patient Registry helps advance research and development of treatments, therapies, and care for all those diagnosed with FSHD in the UK.

💻 Visit our newly revamped website to learn more: fshd-registry.org.uk

Living with, or interested in #Neuromuscular conditions in #NorthernIreland?

Visit qrco.de/bfrgRQ to register for free @mdukcharity.bsky.social Information Day on 4th June.

Our registries team will be there to present our work, answer your questions and support new patient registrations.

🧡👋🧬💻🤝

Registry Managers Helen and SAM (and team mascot Reggie 🦁) are on their way to Glasgow to attend the #MyotonicDystrophy Patient Information Day tomorrow. We'll be presenting the UK DM Patient Registry and supporting new registrations, come and say hello if you're coming along! 💚🖐️🧬
#DM1 #DM2 #NMD

Our #SMA Data Coordinator Aleks (and our mascot Reggie 🦁) are promoting our #NMD #Patient #Registries at the @mdukcharity.bsky.social Awareness Day in Birmingham today.

Come for a chat, or learn more about how we support #MuscularDystrophy communities online: linktr.ee/jwmdrcregistries

Congratulations on another engaging d thought-provoking #GeneticsMatters event @kasiapirog.bsky.social 👏 Lots of interest in demo's of our new #PatientRegistry platform collaboration with @newcastleuni.bsky.social Research Software Engineering! Our team mascot Reggie even came along to join in... 🦁

The curators' meeting was also a fantastic opportunity for our newest team members, Data Coordinators Lucy and Aleks, to learn more about the network and meet the rest of the TGDOC family. They presented registry posters, made lots of valuable connections and represented our team brilliantly! 👏🧬

Great to see so many of our global registry network colleagues at the TREAT-NMD Annual curators meeting in Milan this week! 🌍🤝 Our registries team were involved throughout, leading disease subgroup discussions, presenting our registries and making new connections with registries around the world...

#MuscularDystrophy #UK (@mdukcharity.bsky.social 👋) have launched a patient survey to help develop their new strategy.

🗣️ Ensure your #PatientVoice is heard! Complete the survey here before it closes on 17 Feb: loom.ly/F45mAwg 📝

#Neuromuscular #NMD #MyotonicDystrophy #DM1 #FSHD #SMA

The UK #FSHD Registry Team are attending the Northeast and Cumbria FSHD Engagement Day today, sharing about the latest clinical and research initiatives from JWMDRC. Come and have a chat with us during the breaks about how the registry can support the FSHD patient and research communities! 🧬🔬🍊