Knowledge on rare diseases and orphan drugs

Austrian registry for inborn errors of metabolism Österreichisches Stoffwechselregister

CRRD: Central Registry Rare Diseases Registre Central des Maladies Rares / Centraal Register Zeldzame Ziekten

ERN [Skin] - ERN-Skin REGISTRY: Interoperable ERN on Rare and Undiagnosed Skin Disorders

French National Registry for Rare Diseases (BNDMR) Banque Nationale de Données Maladies Rares (BNDMR)

RaDiCo-FARD: National cohort for the evaluation of individual burden in the course of rare skin diseases RaDiCo-FARD: Cohorte nationale pour l'évaluation du fardeau individuel au cours des maladies dermatologiques rares

RAMEDIS : Rare Metabolic Diseases Database RAMEDIS : Datenbank für seltene Stoffwechselstörungen

U-IMD: Unified European Registry for Inherited Metabolic Disorders -DE U-IMD: Einheitliches Europäisches Register für angeborene Stoffwechselkrankheiten

Rare Diseases Registry - Veneto Region Registro Malattie Rare della Regione Veneto

RNMR: Italian National Rare Diseases Registry RNMR: Registro Nazionale Malattie Rare

Tuscan Registry of Rare Diseases Registro Toscano Malattie Rare

DDRMD - Dutch Diagnosis Registration Metabolic Diseases

EPR : European Porphyria Registry

Norwegian Porphyria Registry Norsk porfyriregister

Norwegian registry on rare disorders Norsk register for sjeldne diagnoser

Population registry of rare diseases and congenital anomalies of Cantabria (Spain) Registro poblacional de enfermedades raras y anomalias congenitas de Cantabria

Rare disease registry of Aragon (Spain) Registro de enfermedades raras de la Comunidad Autónoma de Aragón

Rare Diseases Registry of the Basque Country Registro de Enfermedades Raras de la Comunidad Autónoma de Euskadi

Registry for rare diseases in Andalusia (Spain) Registro de enfermedades raras de Andalucía

Registry for rare diseases in Extremadura (Spain) Registro de enfermedades raras de Extremadura

RePER: Rare Diseases Patient Registry RePER: Registro de Pacientes de Enfermedades Raras

RERGA: Registry for rare diseases in Galicia (Spain) RERGA: Registro de enfermedades raras de Galicia

RERNA: Population-based Rare Disease Registry of Navarre (Spain) RERNA: Registro poblacional de enfermedades raras de Navarra

SIER-CV: Information System on rare diseases in Valencian Community (Spain) SIER-CV: Sistema de Información de Enfermedades Raras de la Comunitat Valenciana

SIERrm: Information System on rare diseases in the Region of Murcia (Spain) SIERrm: Sistema de Información sobre enfermedades raras de la Región de Murcia

Swiss Rare Disease Registry (SRSK) Schweizer Register für seltene Krankheiten (SRSK)

National Congenital Anomaly and Rare Disease Registration Service (NCARDRS)

CORDS Registry: Coordination of Rare Diseases at Sanford Registry