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About EURO-NMD
Coordinator’s Message
Governance
How ERNs are approved?
Main Network Functions
What are ERNs?
Why rare diseases?
Network Structure
Healthcare Providers & Supporting Partners
Healthcare Providers
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Visit the EURO-NMD Registry website
Registry Hub for Rare Neuromuscular Diseases
Registry Hub Paper out now!
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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
Healthcare Providers & Supporting Partners
Healthcare Providers
Supporting Partners
EURO-NMD Coordination team
Board Members
Executive Committee
Working Groups & Speciality Groups
Working Groups
Cross-cutting Speciality Groups
Who’s who in EURO-NMD
Cross-Border Healthcare Directive
Add or update website information
How to Reference our Network in your Publications?
Patient
Patient Advisory Board
Patient Representatives
Overview of Patient Participation in EURO-NMD
Patient Journeys
CPMS
Clinical Patient Management System (CPMS)
CPMS Helpdesk
CPMS training videos
Education
Educational Resources
Educational Board
Webinars
EURO-NMD Academy (Moodle)
Publications
Guidelines
Summer School
Educational Videos
EURO-NMD endorsement of educational activities
News & Events
News
See all articles
Add a new article
Events
See all events
Add a new event
Newsletters
Registry
Visit the EURO-NMD Registry website
Registry Hub for Rare Neuromuscular Diseases
Registry Hub Paper out now!
Registry Onboarding has started
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EURO-NMD Patient Representatives
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EURO-NMD Patient Representatives
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Members of EURO-NMD Patient Representatives
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François Lamy
Fernanda de Angelis
Ingrid de Groot
Emma Del-Rey
Marguerite Friconneau
Sylvie Genet
Madelon Kroneman
Patricia Melsom
Marisol Montolio
Marie-Christine Ouillade
Alejandra Perez del Real
Alexandre Méjat
Boryana Stoyanova
Eva Stumpe
Isabela Tudorache
Katie Waller
Gerard Wellenberg
Ipek Badirgali
Maria Borrell
Silke Schlüeter
Javier Torras
Arabela Acalinei
Dimitrios Athanasiou
Elizabeth Vroom
Evy Reviers
George Paliouras
Javier Torras
Jean-Christophe Fidalgo
Jean-Phillipe Plançon
Joaquim Brites
Leticia San Jose
Peter Ashley
Victoria Castillo
Yasemin Erbas
Massimo Marra
Michela Onali
Filippo Genovese
Carolina Navalon-Martinez
Vitaliy Matyushenko
Maud Raimbault
Operational member
Tamara Shepherd
Operational member
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