Réseaux et Organismes
Rare Diseases Organisation Belgium (RaDiOrg)
Rare Disorders Belgium (RDB)
Ligue des Usagers des Services de Santé asbl (LUSS)
Plateforme pour Patients Flamands (VPP)
Rare Diseases Europe (EURORDIS)
European Network on Rare Multisystemic Vascular Diseases (VASCERN)
Recherche
International Society for the Study of Vascular Anomalies (ISSVA)
Orphanet, portail des maladies rares et médicaments orphelins
European Union Committee of Experts on Rare Diseases