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Registry Hub for Rare Neuromuscular Diseases
Registry Hub Paper out now!
Registry Performance Updates and Onboarding Guidance
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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
My EURO-NMD
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Muscle Disease
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Muscle Disease
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
Consensus-based care recommendations for adults with 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.
Telemedicine in Neuromuscular Diseases During Covid-19 Pandemic: ERN-NMD European Survey
Rapidly Progressive Myopathy: Unveiling Light Chain Amyloidosis as an Initial Manifestation of Multiple Myeloma. A Case Report and Literature Review
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TREAT-NMD is delighted to host a face-to-face, expert-led, one-day Symposium on Duchenne Muscular Dystrophy (DMD). Topics • Outcome measures, •…
