Information for Patients and Families
Our network focuses on clinical research and does not generally support clinical care outside of research activities. View the diseases we currently study and reach out to the indicated consortia or research groups for more information on those diseases.
To learn about other rare diseases, please visit the Genetic and Rare Diseases Information Center (GARD), which is an NIH program that helps the public find reliable information about rare and genetic diseases. Their staff are specialists. Contact them at 1-888-205-2311 or email GARDinfo@nih.gov.
Who We Are
Established by Congress under the Rare Diseases Act in 2002, RDCRN is an initiative of the Office of Rare Diseases Research (ORDR) at the National Institutes of Health’s (NIH’s) National Center for Advancing Translational Sciences (NCATS). View our network of 23 active consortia or research groups.
Our network, now in its fourth five-year funding cycle, is a partnership with funding and programmatic support provided by Institutes, Centers, and Offices across NIH, including the National Institute of Allergy and Infectious Diseases, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Neurological Disorders and Stroke, the National Heart, Lung, and Blood Institute, the National Institute of Arthritis and Musculoskeletal and Skin Diseases, the National Institute of Diabetes and Digestive and Kidney Diseases, the National Institute of Dental and Craniofacial Research, the National Institute of Mental Health and the Office of Dietary Supplements.
The National Institutes of Health (NIH) has awarded approximately $31 million in grants in fiscal year 2019 to 20 teams—including five new groups—of scientists, clinicians, patients, families and patient advocates to study a wide range of rare diseases through the RDCRN. An additional $7 million has been awarded to a separate data coordinating center to support these research efforts. These research teams, called Consortia, will work to better understand rare diseases and move potential treatments closer to the clinic. Please stay tuned as we update this site over the coming months.
Click here to see the full list of awardees.
Bridging The Gap Between Rare Diseases and Research
We are the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS). We are made up of 20 disease research groups (Consortia) and a Data Management and Coordinating Center that work together improving the availability of rare disease information, treatment, clinical studies, and general awareness for both patients and the medical community. We study over 190 diseases and were the first to develop a collaborative network of investigators and patient organizations (patient advocacy groups) to support rare diseases research.