Our Network

Who We Are

We are the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Division of Rare Diseases Research Innovation (DRDRI) within the National Institutes of Health's National Center for Advancing Translational Sciences (NCATS). We are funded by NCATS and collaborating institutes and centers.

Our mission is 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.

Our Goals

Rare diseases come with many challenges. Some diseases are not well characterized or defined, recruitment for trials can be difficult, high-quality evidence to guide treatments is scarce, and very few expert centers are available for diagnosis, management, and research. Our goal is to facilitate clinical research by creating rare diseases research groups to focus on related diseases, sharing the costs of our research infrastructures across the network, establish uniform studies for data collection, and making meaningful large-scale studies possible. We also directly engage with patients and their advocates, and train new investigators in rare diseases research.

physicians stand together to discuss a case
A doctor with a patient who is a child. The patient is smiling and wears a blue top and a red head scarf.

Our History

The RDCRN was established by Congress under the Rare Diseases Act in 2002. The network is an initiative of the National Institutes of Health (NIH), led by the National Center for Advancing Translational Sciences through is Division of Rare Diseases Research Innovation (formerly the Office of Rare Diseases Research). It is funded by collaborating NIH institutes, centers, and offices.

Now in its fourth funding cycle, RDCRN supports 20 rare disease research groups (consortia) that partner with 127 affiliated patient advocacy groups. In total, 180 diseases are currently being studied at 273 active clinical sites, both in the United States and internationally.

2022

NIH announces intent to publish next RDCRN funding announcements in 2024, extending fourth funding cycle from 5 to 6 years.

2022

2019

NIH announces $38 million in funding per year over 5 years for 20 consortia and a DMCC.

2019

2014

NIH announces $29 million in funding per year over 5 years for 22 consortia and a DMCC.

2014

2009

NIH announces $117 million in funding over 5 years for 19 consortia and a data management and coordinating center (DMCC).

2009

2006

NIH announces $71 million in funding over 5 years to support 10 consortia and a central data and technology coordinating center.

2006

2003

NIH establishes RDCRN with $51 million in funding over 5 years for 7 consortia and a data and technology coordinating center.

2003

2002

Congress passes the Rare Diseases Act, directing the NIH to advance medical research on rare diseases.

2002