List of pilot European Reference Networks for Rare Diseases · Dyscerne: European Network of Centres of Reference for Dysmorphology · ECORN CF: European Centres of Reference Network for Cystic Fibrosis · PAAIR: Patient Associations and Alpha1 International Registry, · EPNET European Porphyria Network, · EN-RBD European Network of Rare Bleeding Disorders,
Paediatric Hodgkins Lymphoma Network · NEUROPED: European Network of Reference for Rare Paediatric Neurological Diseases · EURO HISTIO NET: A reference network for Langerhans cell histiocytosis and associated syndrome in EU · TAG: Together Against Genodermatoses · CARE NMD: Dissemination
...[+++]and Implementation of the Standards of Care for Duchene muscular Dystrophy in Europe
