Lis
t 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