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NIH Rare Disease Programs

NIH Rare Disease Programs

A select list of NIH-supported collaborative research efforts for rare diseases.
The Rare Diseases Clinical Research Network

A clinical research network supported by NCATS' ORDR and several other NIH Institutes and Offices.

Global Rare Diseases Patient Registry and Data Repository (GRDR)℠

A pilot project to establish a data repository of de-identified patient data, aggregated in a standardized manner, to enable analyses across many rare diseases and to facilitate various research projects, clinical studies, and clinical trials.

Undiagnosed Diseases Network (UDN)

The Undiagnosed Diseases Network is an NIH-funded research study to improve diagnosis and care of patients with undiagnosed diseases.

Bench-to-Bedside Awards

Rare diseases bench-to-bedside medical research projects designed to speed translation of promising laboratory discoveries into new medical treatments.

Locate healthcare providers and researchers who have knowledge of your condition.

Navigate the process of trying to obtain a diagnosis.