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Coordinator’s Message
Governance
How ERNs are approved?
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What are ERNs?
Why rare diseases?
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Overview of Patient Participation in EURO-NMD
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Focusing on Improving Patient Health Outcomes: The Role of Patient Organisations
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Registry Hub for Rare Neuromuscular Diseases
Registry Hub Paper out now!
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Data Entry Reimbursement Protocol
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
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 Onboarding is ongoing
Registry Onboarding Dashboard
Data Entry Reimbursement Protocol
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Genetics
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Members of Genetics
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Alessandra Ferlini
Chair
Albena Jordanova
Annemieke Aartsma-Rus
Carla D'Angelo
Operational member
Celia Soares
Francesca Gualandi
Gisèle Bonne
Adriano Chiò
David Beeson
Alexandre Méjat
Kristl Claeys
Serenella Servidei
Co-Chair
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Sub groups
Genetics Specialised Group
(Chair: Alessandra Ferlini)
Genetics TaskBoard
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