Introduction

RDCRN annual meeting group photo

Who We Are

We are the Rare Diseases Clinical Research Network (RDCRN), a network of research teams, patients, and advocates supported by the National Institutes of Health (NIH), promoting clinical research on rare diseases. Our rare disease research community is made up of consortia studying at least three related rare diseases at sites across the nation.

Our History

The RDCRN was established by the NIH after Congress passed the Rare Diseases Act in 2002. Led by the National Center for Advancing Translational Sciences through its Division of Rare Diseases Research Innovation, the network comprises multiple clinical research consortia funded by NIH Institutes, Centers, and Offices, and one Data Management and Coordinating Center (DMCC). Every five years, the NIH holds a competition to select groups to participate in the RDCRN. Over the years, many different consortia have received support from the network. In 2025, we entered our fifth funding cycle.

Our Vision

Faster diagnosis, better treatments, and improved quality of life for patients with rare diseases.

Our Goals

We pursue our vision by promoting clinical trial readiness; by advancing knowledge that makes it possible to test new treatments; by promoting the engagement of patients and patient advocates in the design and conduct of the research; and by promoting the career development of new researchers.

Our Mission

We advance rare disease research by providing support for clinical studies about the natural history of rare diseases, identifying biomarkers and potential clinical outcomes, and setting the stage for clinical trials of new treatments. Our consortia leverage a centralized research infrastructure and common, best-practice data standards to facilitate collaboration, study enrollment, data sharing, and rigorous research projects. Our website and outreach initiatives share our findings with the community. The collaborative environment we create promotes career development for the next generation of rare disease researchers.