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The European Organisation for Rare Diseases, EURORDIS www.eurordis.org
International Pompe Association www.worldpompe.org
ENMC www.enmc.org
euro-ATAXIA www.euro-ataxia.eu
European Organisation for Rare Diseases. Eurordis www.eurordis.org/
International Platform for Patients with Mitochondrial Diseases
Secretariat: Hanka Meutgeert - Adults and Children with Metabolic Diseases
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FSH Patients Platform Europe
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Duchenne Patient Project Europe www.duchenne.nl
International Alliance of ALS/MND Associations www.alsmndalliance.org
MYORES http://website.myores.org/website
ICEWH
 http://www.icewh.org/