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Home
About EURO-NMD
Coordinator’s Message
Governance
How ERNs are approved?
Main Network Functions
What are ERNs?
Why rare diseases?
Network Structure
Board Members
Executive Committee
EURO-NMD Coordination team
Healthcare Providers & Supporting Partners
Healthcare Providers
Supporting Partners
Working Groups & Speciality Groups
Working Groups
Cross-cutting Speciality Groups
Who’s who in EURO-NMD
Continuous Monitoring
Cross-Border Healthcare Directive
#ERNcare4Ua – Solidarity with Ukraine
Add or update website information
How to Reference our Network in your Publications?
User Guide and other relevant resources
Patients
Patient Advisory Board
Overview of Patient Participation in EURO-NMD
Patient Representatives
Patient Journeys
Focusing on Improving Patient Health Outcomes: The Role of Patient Organisations
Patient tools & resources
CPMS
Clinical Patient Management System (CPMS)
CPMS Helpdesk
CPMS training videos and FAQ
CPMS days
Education
Educational Resources
Educational Board
Webinars
EURO-NMD Academy (Moodle)
Publications
Guidelines-Consensus-CDST
Educational / Training School
Educational Videos
EURO-NMD endorsement of educational activities
Collaborations
European Projects
Inter-ERN Groups
News & Events
News
See all articles
Propose an article for the website
Events
See all events
Propose a new event to be added to the website
Newsletters
Registry
Registry Hub for Rare Neuromuscular Diseases
Registry Hub Paper out now!
Registry Performance Updates and Onboarding Guidance
Registry Onboarding Dashboard
Data Entry Reimbursement Protocol
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Muscle Disease
Muscle Disease
Registration open for Duchenne Care Conference 2026
The World Duchenne Organization invites healthcare professionals and patient organization representatives to attend the Duchenne Care Conference 2026, taking place online…
VCP Standards of Care Working Group. Development of a standard of care for patients with valosin-containing protein associated multisystem proteinopathy.
EAN 2024 Guideline on the Diagnostic Approach to Oligo/Asymptomatic HyperCKemia
Development of a guideline for orthopaedic management in the care of children and young people with Duchenne muscular dystrophy in the UK National Health Service
276th ENMC International Workshop: recommendations on optimal diagnostic pathway and management strategy for patients with acute rhabdomyolysis worldwide. 15th-17th March 2024, Hoofddorp, The Netherlands
273rd ENMC International workshop: Clinico-Sero-morphological classification of the Antisynthetase syndrome. Amsterdam, The Netherlands, 27-29 October 2023
256th ENMC international workshop: Myositis specific and associated autoantibodies (MSA-ab): Amsterdam, The Netherlands, 8-10 October 2021
255th ENMC workshop: Muscle imaging in idiopathic inflammatory myopathies. 15th January, 16th January and 22nd January 2021 – virtual meeting and hybrid meeting on 9th and 19th September 2022 in Hoofddorp, The Netherlands
224th ENMC International Workshop:: Clinico-sero-pathological classification of immune-mediated necrotizing myopathies Zandvoort, The Netherlands, 14-16 October 2016
Be Part of the 2nd World COL6 Myopathy Day – 6 June 2026
World COL6 Myopathy Day 2026 We are pleased to invite you to take part in the 2nd World COL6 Myopathy…
TREAT-NMD – FSHD Masterclass
On the 17th - 18th July 2026 join us for a two‑day masterclass in collaboration with FSHD Europe/ FSHD European Trial Network,…
Orthopaedic Complications
…TIMESLOT: Thursday 26 March 2026, 16:00 CET …MAIN TITLE: Orthopaedic Complications …PRESENTERS: Dr. Philip Henman (The Newcastle upon Tyne Hospitals…
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