In Feb 2025, ERN registries, c4c partners and additional experts held a workshop to explore the current potentiality of the ERN registries for paediatric research and regulatory purposes, to explore gaps and suggest actions to maximise potential. https://t.co/avEiBG2111

🚀 Not long to go for the 2nd International Conference on Clinical Research Networks! 🚀 A key global event on clinical research networks, with great speakers & chairs lined up! Full programme & registration👉 https://t.co/GXRHRHweoT 🚨 Limited in-person spots available

Join the @RareDiseasesIBG seminar! 💡 📅 12 Nov, 11:00 | 📍 Aziz Sancar Auditorium 🎤 Basak Usyal, Senior PM for #ERDERA’s Data Service Hub, presents “ERDERA as a strategic backbone for Europe’s rare disease ecosystem.” Join here 👉 https://t.co/vTb549f7RD #RareDiseases

Rare disease research needs a more integrated and collaborative approach. Next week, experts from across our 4 Translational Centres for Rare Disease, will meet to discuss the year's progress, share knowledge, and discuss the challenges and opportunities to come.

This #TopicalReview by Elisa Villalobos (@jwmdrc) et al. discusses understanding #adipogenesis in muscle degeneration for disease modulation, from fibro/adipogenic progenitors to adipocytes 📖 🔬 🔗 Read it here: https://t.co/Q7ursvdSqs

👏 Congratulations to the @JainFoundation on 20yrs of research excellence! Prof Volker Straub: “We’re proud to feature on key milestones & continue our strong partnership—building global community & advancing care for LGMDR2.” 🔗 https://t.co/cbT8s1nlr4 #LGMD #RareDisease

We have a strong attendance at #WMS2025 on its 30th birthday, and this is the last year for our Centre Director, Prof. Volker Straub, as President. Volker gave the Congress Welcome this morning, inviting everyone to have an enjoyable and productive few days here in Vienna

📢New projects feature in the #LGMD News Autumn edition. Produced for the community by the @speakfoundation , this is a great resource for members of the LGMD community🙌 See page 14 for an article about new projects at our centre! 📰Sign up here: https://t.co/jnDi9uxp6I

Today we're supporting #LGMD Awareness Day! 🙌 While we can't reverse LGMD yet, proper care, support, and therapies can make a world of difference. Let's advocate for accessible care for all living with LGMD. #LGMDday2025 #lgmdawarenessday @LgmdAwareness

It's #LGMD Awareness Day! Help raise awareness by spreading the word. The Speak foundation made a short video about the importance of the patient international LGMD patient conference: https://t.co/qEHgR0Ni9k #LGMDday2025 #LGMDawareness @LgmdAwareness @speakfoundation

Today at the FSHD Annual Engagement Day experts from NuTH are giving useful talks on pain management, sleep issues and exercise prescription👩‍⚕️ We're also getting research updates from the lab team on FSHD mechanisms, lab studies and imaging projects👨‍🔬 #FSHD

Today at the FSHD North East & Cumbria Annual Engagement Day, experts from our centre have given talks about our current research and the work underway to support individuals and families affected by #FSHD. A great space for connection, collaboration, and community 🙌

We are looking for a Project Assistant! Join an exciting international project led by Professor Volker Straub that harnesses AI & MRI technology that aims to help improve diagnosis and monitoring of neuromuscular diseases. To find out more & apply: https://t.co/HcRQizklsB

🍂 Save 20% on your ticket to the 8th International @TREAT_NMD® Conference! 📅 10–12 Feb 2026 📍 Lisbon 🎟️ Book by 30 Sept & use code AUTUMN20 Join global experts in #neuromuscular healthcare🌍 🔗 https://t.co/08IhLbgIWa #TREATNMD #Lisbon2026 #RareDisease #AutumnOffer

In the latest Scientific Session of @LatinSEQ, Dr Marianela Schiava from @jwmdrc delivered a brilliant talk on the use of glucocorticoids across the lifespan in #DMD. A true masterclass in applying statistical modelling to real-world #neuromuscular care and trial design.

Today we're supporting international myotonic dystrophy awareness day! #MyotonicDystrophy (DM) is an inherited multisystem condition that mainly causes progressive muscle loss, weakness and myotonia. Join us in raising awareness and supporting research: https://t.co/uPj9I13CH2

📢Families affected by #Duchenne: join 2 online nutrition sessions hosted by @DuchenneUK & clinical experts. 🗓️25 Sep – Starting steroids: https://t.co/6evpRWPiUR🗓️30 Sep – Loss of ambulation: https://t.co/nf3ZEXioEV 💬Send questions by 18 Sept to Laurie.Cave@glasgow.ac.uk

⭐£22 million NIHR investment to strengthen UK health and life sciences innovation⭐ We are delighted to announce that @NIHRIO at @UniofNewcastle has been awarded £22M by the @NIHR to continue research identifying emerging medicines, diagnostics, devices and digital

📢 Ahead of World Duchenne Awareness Day, @NICEComms announced its first curated guideline—reviewing DMD Care UK’s cardiac care guidance for children & carriers. A vital step toward consistent, high-quality care across the UK. #WDAD2025 #DuchenneMD 🔗 https://t.co/QekJgQJYmh

🎈 On World Duchenne Awareness Day, we stand with the #Duchenne & #Becker MD community. At JWMDRC, we’re committed to advancing care, research & inclusion—because Duchenne is a lifelong journey. #WDAD2025 @DuchenneDay @worldduchenne @DuchenneUK @ActionDuchenne