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research

How to Find a Disease Specialist

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

Tips for the Undiagnosed

Navigate the process of trying to obtain a diagnosis.

ORDR Programs

ORDR Programs

The Office of Rare Diseases Research aims to improve the lives of people with rare diseases by coordinating the following collaborative research efforts.

Bench-to-Bedside Awards

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

The Rare Diseases Clinical Research Network

A clinical research network supported by NIH Institutes and Centers and the ORDR.

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.

Rare Diseases Human Biospecimens/Biorepositories (RD-HuB)

A searchable database of biospecimens collected, stored, and distributed by biorepositories in the United States and around the globe.

Undiagnosed Diseases Program

The Undiagnosed Diseases Program provides answers to patients with mysterious conditions that have long eluded diagnosis and advanced medical knowledge about rare and common diseases.