Contact Us
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.
RDCRN Program Director
RDCRN is an initiative of the Division of Rare Diseases Research Innovation (DRDRI) at the National Institutes of Health’s National Center for Advancing Translational Sciences (NCATS). Tiina Urv, PhD, is the NCATS Program Director for RDCRN. She can be reached via email at urvtiin@mail.nih.gov.
Data Management and Coordinating Center
The RDCRN Data Management and Coordinating Center (DMCC) is based at Cincinnati Children’s Hospital Medical Center and the University of Cincinnati. The DMCC facilitates network operations, research, participant engagement, and data sharing. It also hosts the RDCRN websites. Please direct questions to RD.DMCC@cchmc.org.
Who Do I Contact for Questions Regarding a Rare Disease Not Currently Studied By the RDCRN?
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 888-205-2311 or email GARDinfo@nih.gov.