On #LGMDAwarenessDay, we're passionate about educating for #LGMD. Dr Meredith James, developer of the NSAD assessment, joined Prof. Nicole Voermans & Prof. Jorge Bevilacqua at the WMS Teaching Course in Hiroshima, leading training in standardised functional testing for NM care.
Prof. Chiara Marini Bettolo explains how the HSS for Rare NMD works in practice. The JWMDRC leads the UK service for #LGMD and distal myopathies. On LGMD Awareness Day, we'd like to signpost clinicians with suspected LGMD cases to [email protected] for referrals or advice
Huge thanks to @AtriumHealth for welcoming Heather Hilsden, PM for the Jain COS Study. Proud founding members of the Consortium and a Speak Foundation Centre of Excellence for #LGMD
🙌 Scott Holsten has assessed every COS participant at every visit since 2012
We're looking for a Research Associate to join our team for a distinctive opportunity to contribute to an ambitious and collaborative programme focused on the “dark proteome” in facioscapulohumeral muscular dystrophy (FSHD).
Find out more and apply: jobs.ncl.ac.uk/job/Newcastle…
JWMDRC retweeted
Today is International Myotonic Dystrophy Awareness Day 💚
We’re raising awareness of myotonic dystrophy (DM) and highlighting the importance of continued research, collaboration and better care for people living with the condition.
#MyotonicDystrophyAwarenessDay
Returning for its 3rd year, BEED brings the Becker Muscular Dystrophy (#BMD) community together to learn, share & connect.
Free to attend; travel support available. Designed for people with Becker MD, families and carers.
Register today: bit.ly/4h7HfJg
Join us on 15 August 2026 for the FSHD North East & North Cumbria Annual Engagement Day in Newcastle.
Connect with the #FSHD community, hear the latest research updates, and meet researchers and healthcare professionals.
Please register here: bit.ly/4w2zfx1
We are looking for a motivated and organised Clinical Trial Coordinator to join the multidisciplinary team at the JWMDRC, supporting the delivery of innovative clinical research in neuromuscular diseases.
Find out more: healthjobsuk.com/job/v810497…
On #WorldFSHDDay we join the community raising awareness of Facioscapulohumeral Muscular Dystrophy (#FSHD).
We are delighted to announce our 3rd FSHD Patient Engagement Day will take place on Saturday, 15 August. Look out for more information coming soon!
JWMDRC retweeted
Join us at our Becker Education and Engagement Day. A chance for those living with BMD, to supporting someone who is to connect with the wider Becker community.
Apply via the link 🔗 treat-nmd.org/event/becker-e…
JWMDRC retweeted
Adult neuromuscular care is complex. Clinicians need the knowledge and confidence to recognise adult presentations, manage complications, and deliver coordinated, high-quality care. Applications for our Adult NMD masterclass close in 2 days - Apply now🔗forms.monday.com/forms/a8c1a…
JWMDRC retweeted
June 20th is World FSHD Day, and we want to share the basics to help spread understanding!
In honor of World FSHD Day, help us spread awareness and share with someone you know 🧡🍊
To learn more information use this link:
fshdsociety.org/living-with-…
#FSHD #WorldFSHDDay
JWMDRC retweeted
Something new is coming...
TREAT-NMD is launching an HTA Readiness Workshop Series for rare neuromuscular diseases. Help us shape it.
Submit an Expression of Interest form below 🔗
forms.monday.com/forms/f59fb…
JWMDRC retweeted
What is ERDERA, and why does it matter? 🤔
30 million people in Europe live with a rare disease. Yet most still lack a diagnosis or treatment. So what is ERDERA doing about it?
Watch the short video to find out: youtube.com/watch?v=kK2l-GxZ… 🔁
#ERDERA #RareDiseases
JWMDRC retweeted
🌍 At a pivotal moment for Europe, ERDERA gathered NMGs, EU stakeholders & global partners in Sofia with one goal: stronger alignment to accelerate research & impact.
🎥 Watch the insights: youtube.com/watch?v=L9g3ZeRS…
JWMDRC retweeted
📣 Sign up for #RDSAConnect today!
Created by Rare Diseases South Africa, this patient-first registry helps ensure rare disease communities are seen, heard, and counted.
👉Join here: raregistry.org.za/login
#RareRegistry #RareDiseaseAwareness
JWMDRC retweeted
To mark our 20th anniversary, we announce The Past and Future of Translational Research in Neuromuscular Disease May 2027.
Building on our 2026 conference, this event reflects 20 years of progress and the future we will shape together. Register your interest to attend below.
JWMDRC retweeted
⏳ Less than 1 week until #ECRD2026!
Session 1 of the Preparing Reimbursement Decisions track will explore the first 18 months of HTAR implementation, including JCAs, JSCs & orphan products. Join us online: go.eurordis.org/ECRDprogramm…
ALT Panel of seven speakers discussing health technology assessment regulation at a conference with an attentive audience in Prague.
