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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