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Table 2 The list of existing clinical RD registries

From: Development of a pilot rare disease registry: a focus group study of initial steps towards the establishment of a rare disease ecosystem in Slovenia

Registry name

Registry of Patients with Cystic Fibrosis

Registry of Patients with Inborn Errors of Metabolism

National Registry of Patients with Fabry’s Disease

Registry of People with Blood Clotting Disorders

Registry of Patients with Renal Failure

Registry of Patients with Neuromuscular Diseases

Slovenian National Registry of Patients with Primary Immune Deficiency

Registry of Congenital Anomalies

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Orphanet Journal of Rare Diseases

ISSN: 1750-1172