We’re delighted to be at Muscular Dystrophy UK’s Birmingham Information Day on Sat 14 March — a free event for adults and parents of children with muscle‑wasting conditions.
We’ll be representing JWMDRC and sharing the work of our Registries Team.
Sign up here: bit.ly/4rj0CQM
Thrilled to announce our paper has been accepted in the Journal of Neuromuscular Disorders. This was a fantastic effort bringing the efforts of patient community, registry and researchers together to learn more about liver health in MTM-CNM patients
bit.ly/4rKvfQd
📢 New paper published, "Respiratory function in Becker muscular dystrophy: a comprehensive longitudinal study" which informs clinical surveillance strategies & care recommendations, and supports the design & interpretation of clinical trials in #BMD 🙌
bit.ly/4chzdLr
Our national and international #neuromuscular patient registries are proud to support #RareDiseaseDay!
Learn more about our work at jwmdrc.org/networking/registries
#LightUpForRare #ShareYourColours
📢NOW OPEN!
The NIHR Newcastle PSRC Pre-Application Support Fund is now live.
Attend info webinar - 12th February 13:00 - 14:00. psrc-ncl.nihr.ac.uk/academic-car...
Deadline: 13th March.
@newcastleuni.bsky.social @nclpharmacy.bsky.social @medicalsciencesncl.bsky.social @nihrpsrcs.bsky.social
📢 New academic initiative aimed at characterizing multisystem proteinopathies
We invite colleagues worldwide who have diagnosed patients with genetic variants in MSP-associated genes to participate in this international collaboration
Find out more: bit.ly/4qjIRkH
A new year, a new paper!
Congratulations to the Basic Research team for this paper on unknown molecular interactions of EGFR that drive muscle degeneration in #DMD
These insights open the door to targeted therapies that could help slow muscle degeneration in muscle dystrophies
bit.ly/4sINHKe
Proud to partner with @eurordis for #ECRD2026, Europe’s largest patient-led rare disease event. Join us in Prague & online, 3–4 June 2026. Poster abstracts now open! 👉 www.rare-diseases.eu/posters
Applications are open to join the PaLaDIn Patient and Caregiver User Group (PCUG).
We're looking for #patients and #caregivers with experience of a #neuromuscular disease to join and contribute.
Further information is available here: bit.ly/47V9DrS
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 Speak Foundation, 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: bit.ly/4pWGsNl
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
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 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: bit.ly/41Wng82
⭐£22M NIHR investment to strengthen UK health & life sciences innovation
We are delighted that @nihr-io.bsky.social at @newcastleuni.bsky.social has been awarded £22M by @nihr.bsky.social to continue research identifying emerging medicines, diagnostics, devices & digital tech
👉 ow.ly/ooyc50WPtFj
🎈 On World Duchenne Awareness Day, we stand with the #Duchenne & #Becker Muscular Dystrophy community.
At JWMDRC, we’re committed to advancing care, research & inclusion—because Duchenne is a lifelong journey.
#WDAD2025
FSHD Annual Engagement Day – 25 Sept, Newcastle
🔬 Research updates
🩺 Clinical sessions
👩⚕️ 1:1 consultations
💬 Last year: “high quality, interactive & informative”
Book now: rb.gy/gabmw7
#FSHD
Our director Volker Straub receiving the LGMD Innovator award from Kelly Brazzo from CureLGMD2i at the International LGMD Conference in Orlando on 19th July 👏🥳
#LGMD
We're looking for children & adults with Nemaline Myopathy to join a study to collect data on the natural progression of the condition.
Help us understand Nemaline Myopathy to be ready for therapeutic developments
See more at bit.ly/3HeoRPc
#NemalineMyopathy #RareDisease
🔍 Want to model rare disease progression using #ArtificialIntelligence & #ML? Join a PhD at Newcastle Uni tackling FSHD with #bioinformatics + #MachineLearning. Part of LifeArc ARDT’s £12m UK-wide initiative.
To apply: bit.ly/4eVKUqe
Join us for the FSHD Engagement Day in Newcastle on 25 Sept 2025! Connect with others, hear from experts & explore key aspects of life with FSHD.
Book your place: rb.gy/gabmw7
#FSHD #FSHDUK #FSHDEurope #WorldFSHDDay
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
The JWMDRC is proud to support the launch of the PaLaDIn Interactium data platform tender! Bids are open till 17 July—help us shape the future of rare disease data infrastructure.
More info 👉 project-paladin.eu/paladin-inte...
Chris Higgins, CEO of Rare Disorders New Zealand, visited us to explore advances in rare disease care & research. We discussed #neuromuscular projects like Care-DMD, PaLaDIn & MYO-Seq. His visit sparked ideas for strategic collaboration across regions. 🇳🇿🇬🇧
#RareDisease #DMD #MYO
We are pleased to announce a new paper published on a study aimed to characterise a large cohort of paediatric and adult patients with Becker muscular dystrophy (#BMD) to inform clinical care and the development of standards of care guidelines 👏
link.springer.com/content/pdf/...
We attended the MDUK Patient Day in Northern Ireland to talk about our vital work in neuromuscular diseases. Helen Walker gave a talk on the importance of patient registries, and Abby Scott and Adam Kerr spoke to delegates about the #BMD Hub and #DMD Care UK.
Dr Adam McDiarmid, Consultant Cardiac Transplant Physician & Chair of DMD Care UK's cardiac MRI task force, speaks today at #BCS2025 on cardiac imaging in Duchenne.
Great to see this vital topic highlighted at such a high-profile event! 👏
#DMD #CardiacCare
Congratulations to conect4children who have just had a paper published in the Journal of Medical Internet Research 'The potential to leverage real-world data for paediatric clinical trials: A proof of concept study' 👏
www.jmir.org/2025/1/e72573
