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research

NIH Rare Disease Programs

NIH Rare Disease Programs

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

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

NIH/NCATS GRDR℠ Program (Global Rare Diseases Patient Registry Data Repository)

The aim of the GRDR program is to develop a Web-based resource that aggregates, secures and stores de-identified patient information from many different registries for rare diseases, all in one place.

Therapeutics for Rare and Neglected Diseases (TRND)

The TRND program in the NCATS Division of Pre-Clinical Innovation aims to encourage and speed the development of new drugs for rare and neglected diseases.

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.