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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
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
Education
Educational Resources
Educational Board
Webinars
EURO-NMD Academy (Moodle)
Publications
Guidelines-Consensus-CDST
Summer 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 Onboarding is ongoing
Registry Onboarding Dashboard
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Muscle Disease
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Muscle Disease
Duchenne Care Conference 2025
Registration is now open for the Duchenne Care Conference 2025! The World Duchenne Organization is thrilled to announce that registrations…
Kick-off Meeting of the European Clinical Research Network for Myotonic Dystrophies – Munich 2025
EURO-NMD is proud to announce the Kick-off Meeting of the European Clinical Research Network for Myotonic Dystrophies (DMs), taking place…
The European reference network for metabolic diseases (MetabERN) clinical pathway recommendations for Pompe disease (acid maltase deficiency, glycogen storage disease type II)
The European reference network for metabolic diseases (MetabERN) clinical pathway recommendations for Pompe disease (acid maltase deficiency, glycogen storage disease type II)
Development of Continuum of Care for McArdle disease: A practical tool for clinicians and patients
Nutrition management guideline for very-long chain acyl-CoA dehydrogenase deficiency (VLCAD): An evidence- and consensus-based approach
272nd ENMC international workshop: 10 Years of progress – revision of the ENMC 2013 diagnostic criteria for inclusion body myositis and clinical trial readiness. 16–18 June 2023, Hoofddorp, The Netherlands
Best practice guidelines on genetic diagnostics of facioscapulohumeral muscular dystrophy: Update of the 2012 guidelines.
Development of a standard of care for patients with valosin-containing protein associated multisystem proteinopathy
Consensus-based care recommendations for congenital and childhood-onset myotonic dystrophy type 1
Duchenne Muscular Dystrophy Industry Symposium
TREAT-NMD is delighted to host a face-to-face, expert-led, one-day Symposium on Duchenne Muscular Dystrophy (DMD). Topics • Outcome measures, •…
Diagnosis and management of Duchenne muscular dystrophy, part 2: respiratory, cardiac, bone health, and orthopaedic management.
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