The following contact information is provided for correspondence regarding administrative questions and operations of the Rare Diseases Clinical Research Network (RDCRN). We are unable to answer medical questions.
Who Do I Contact for Questions Regarding a Rare Disease?
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.