Locate healthcare providers and researchers who have knowledge of your condition.
Navigate the process of trying to obtain a diagnosis.
The Office of Rare Diseases Research aims to improve the lives of people with rare diseases by coordinating the following collaborative research efforts.
Rare diseases bench-to-bedside medical research projects designed to speed translation of promising laboratory discoveries into new medical treatments.
A clinical research network supported by NIH Institutes and Centers and the ORDR.
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.
A searchable database of biospecimens collected, stored, and distributed by biorepositories in the United States and around the globe.
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.