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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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21

Research groups funded

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200+

Diseases studied

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170

Patient advocacy partners

NIH Announces Funding to Establish and Strengthen Rare Disease Research Groups

The National Institutes of Health (NIH) has awarded approximately $26 million in grants in the fiscal year 2025 to begin the fifth cycle of funding for the Rare Diseases Clinical Research Network (RDCRN).

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Honeycomb-style infographic showing the structure of the Rare Diseases Clinical Research Network with consortia names

Rare Research Report: October 2025

Each month, we share summaries of recent Rare Diseases Clinical Research Network grant-funded publications. Catch up on RDCRN research for October 2025.

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Rare Research Report logo

Dystonia Coalition: Advice and Accomplishments from 15 Years of Dystonia Research

Principal Investigator Hyder Jinnah, MD, PhD, shares advice and accomplishments from 15 years of dystonia research.

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Dystonia Coalition logo


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.

If you are looking for information on rare diseases not currently studied by the RDCRN, visit the NIH’s Genetic and Rare Diseases Information Center (GARD), which helps the public find reliable information about rare and genetic diseases. Contact their specialists at 888-205-2311 or email GARDinfo@nih.gov.