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| Country | Associations & Link |
| Spain | Federación Española de Enfermedades Raras (FEDER) |
| Austria | Pro Rare Austria - Allianz für seltene Erkrankungen |
| Italy | AMA fuori dal buio - Associazione Malati Autoimmuni Orfani Rari |
| Belgium | RaDiOrg - Rare Diseases Belgium - BE |
| Germany | Allianz Chronischer Seltener Erkrankungen |