Netwerken en organisaties
Rare Diseases Organisation Belgium (RaDiOrg)
Rare Disorders Belgium (RDB)
Ligue des Usagers des Services de Santé asbl (LUSS)
Vlaams Patienten Platform (VPP)
Rare Diseases Europe (EURORDIS)
European Network on Rare Multisystemic Vascular Diseases (VASCERN)
Onderzoek
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