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Patient Representatives

Country
City 
Name 
Representative
Rare Muscle
Neuromuscular Junction
Peripheral Neuropathies
Motor Neuron Diseases
Mitochondrial diseases
Italy
San Lazzaro di Savena
ACMT-Rete
ACMT-Rete
Filippo Genovese
France
Évry-Courcouronnes
AFM-Téléthon
Alexandre Méjat
Marguerite Friconneau
François Lamy
Belgium
Leuven
ALS Liga Belgium
ALS Liga Belgium
Evy Reviers
Portugal
Porto
APN - Associação Portuguesa de Neuromusculares
APN - Associação Portuguesa de Neuromusculares
Joaquim Brites
Spain
Barcelona
ASEM Catalunya
Maria Borrell
Javier Torras
France
Toulouse
Association contre les maladies mitochondriales (AMMi)
Association contre les maladies mitochondriales (AMMi)
Emma Del-Rey
Ukraine
Kharkiv
Children with SMA - Ukraine
Children with SMA - Ukraine
Vitaliy Matyushenko
Italy
Tricase
CIDP Italia ONLUS Associazione italiana dei pazienti di neuropatie disimmuni
CIDP Italia ONLUS Associazione italiana dei pazienti di neuropatie disimmuni
Massimo Marra
Germany
Bad Salzuflen
DGM - German Myositis Diagnosis Group
DGM - German Myositis Diagnosis Group
Silke Schlüeter
Netherlands
Amsterdam
Duchenne Data Foundation
Duchenne Data Foundation
Spain
Madrid
Duchenne Parent Project España
Marisol Montolio
The Netherlands
Epe
Dutch Patient Working Group Myotonic Dystrophy
France
Le Pouliguen
EPODIN
EPODIN
Jean-Phillipe Plançon
United Kingdom
Lincoln
Euro-DyMA
Euro-DyMA
Peter Ashley
Slovenia
Ljubljana
European Alliance of Neuromuscular Disorders Associations (EAMDA)
Arabela Acalinei
Belgium
Bruxelles
European CMT Federation
European CMT Federation
Filippo Genovese
Belgium
La Louvière
European Myasthenia Gravis Association (EuMGA)
Lutgarde Allard
Maya Bonaria Uccheddu
Norway
Nesbru
FFM Neuromuscular Disorders Association of Norway
Foreningen for muskelsyke - FFM
Patricia Melsom
Spain
Camarles
Fundación Noelia
Maria Borrell
Spain
Madrid
GBS|CIDP España- Neuropatias Autoinmunes
Alejandra Perez del Real
Italy
San Giovanni La Punta
Gli Equilibristi HIBM
Michela Onali
United Kingdom
London
Muscular Dystrophy UK
Muscular Dystrophy UK
Gerard Wellenberg
Bulgaria
Slivnitsa
National association of patients with mitochondrial diseases
Boryana Stoyanova
Italy
Roma
Parent Project APS
Fernanda de Angelis
Romania
Craiova
Parent Project Romania
Parent Project Romania
Isabela Tudorache
Greece
Rare Diseases Greece
Germany
Freiburg im Breisgau
SMA Europe e.V.
Eva Stumpe
Spain
Madrid
Spanish association of patients affected by Arthrogryposis Multiplex Congenita
Asociación Artrogriposis Múltiple Congénita
Victoria Castillo
Carolina Navalon-Martinez
Netherlands
Baarn
Spierziekten Nederland
Madelon Kroneman
Ingrid de Groot
United Kingdom
Warlingham
The Lily Foundation
Katie Waller
Netherlands
Veenendaal
World Duchenne Organization
World Duchenne Organization
Dimitrios Athanasiou