Skip to main content

A consortium of scientists, industry stakeholders, and patient advocacy leaders working together to promote advances in the diagnosis and treatment of leukodystrophies.

find a study

Join one of our research studies

Participants make it possible for researchers to find new treatments, speed diagnosis, and improve the lives of those affected by rare diseases.

Find a study

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.

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.

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.

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