國內外病友團體
國外病友團體
Rare Disease DayRare Disease International (RDI)Asia Pacific Alliance of Rare Disease OrganisationEurordis-European Organization for Rare DiseasesCanadian Organization for Rare Disorders (CORD)Malaysia Lysosomal Diseases Association (MLDA)National Organization for Rare DisordersPhilippine Society for Orphan DisordersGenetic Alliance日本ASrid香港罕見疾病聯盟中國罕見病發展中心 (CORD)