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Graphic of all Rare Disease Network Consortia

Who We Are

The RDCRN program is designed to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing. Through the RDCRN consortia, physician scientists and their multidisciplinary teams work together with patient advocacy groups to study nearly 200 rare diseases at sites across the nation.

Learn About Our Consortia Learn About Our Data Management Coordinating Center
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20

Research groups funded

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200+

Diseases studied

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170

Patient advocacy partners

National Survey Reveals Impact of COVID-19 on People Living with Rare Diseases and Their Families

The devastating impact of COVID-19 on the general population is well-documented—but less is known about the millions of people living with rare diseases.

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Flyer advertising the survey appearing on a laptop screen.

Join the RDCRN for Rare Disease Day at NIH on February 29, 2024

Don’t miss the in-person and virtual celebration of Rare Disease Day at NIH on Thursday, February 29, 2024, from 9 am to 5 pm EST.

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Rare Disease Day at NIH. February 29, 2024. #RDDNIH.

Twenty Years of the Rare Diseases Clinical Research Network: Looking Back, Looking Ahead

The Rare Diseases Act of 2002 (H.R. 4013) enacted the establishment of the Rare Diseases Clinical Research Network (RDCRN) in 2003.

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Keyword co-occurrence visualization map of RDCRN-supported publications 2004–2020.


Rare Research Report Podcast

Listen to "Rare Research Report" on Spreaker.


 

Training The Next Generation

Training the Next Generation of Researchers

Our consortia place a high priority on the recruitment, training and support of early career researchers due to the significant need for well-trained clinical researchers in the rare diseases field.

Find Opportunities

Information for Patients and Families

Our network focuses on clinical research and does not generally support clinical care outside research activities. View the diseases that we currently study here. To learn about other rare diseases, visit the NIH’s Genetic and Rare Diseases Information Center (GARD), which helps the public reliable information about rare and genetic diseases. Contact their specialists at 888-205-2311 or email GARDinfo@nih.gov.

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NIH Funding Institutes, Centers, and Offices

Established by Congress under the Rare Diseases Act in 2002, RDCRN is an initiative of the Division of Rare Diseases Research Innovation at the National Institutes of Health’s National Center for Advancing Translational Sciences. 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.