Working to advance the pace of clinical and translational research in the dystonias to find better treatments.

Join One of Our Research Studies
Participants make it possible for researchers to find new treatments, speed up diagnosis, and improve the lives of those affected by rare diseases.
Find a StudyTraining Program for Clinical Research in Rare Disease Launches New Session
The National Institutes of Health-funded R25 Rare Disease Clinical Research Training Program is launching a new training program for clinical research in rare disease. Now in its seventh year, this year-long, hybrid, free program is designed to support new investigators in the field of rare disease clinical research.

Rare Research Report: September 2022
Each month, we share summaries of recent Rare Diseases Clinical Research Network (RDCRN) grant-funded publications. Catch up on the latest RDCRN research.

Patient Advocate Spotlight: Mark Rudolph Supports and Connects the Dystonia Community
Mark Rudolph serves as president of the Dystonia Medical Research Foundation (DMRF), a patient advocacy group that supports individuals and families affected by dystonia. The dystonias are a large group of movement disorders causing uncontrollable, sometimes painful, involuntary muscle contractions, resulting in repetitive shaking, turning, and twisting of affected body parts. Here, he shares his journey to rare disease advocacy, impactful work by the DMRF, and collaboration with the Dystonia Coalition (DC).
