Ysbrand Poortman
World Alliance Neuromuscular Disease Associations (WANDA)
European Platform Patient organisations, Science and Industry (EPPOSI)
Dutch Alliance Parent and Patient organisations
Patrick Terry
American Genetic Alliance
Alastair Kent
European Alliance of Parent and Patient organisations (EAGS)
Genetic Interests Groups of Great Britain (GIG)
Darius Farhud
Alliance of Parents/Parents Organisations of Iran
Karen Turner
Belgian National Alliance for Rare Diseases, disorders and disabilities (RDB, Rare Disorders Belgium)
Kessler Sebastien
Roman and Italian Swiss Alliance for neuromuscular diseases (ASRIM)
Fons Dekkers
European Health Forum (EHF)
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