Rare Diseases Clinical Research Network (RDCRN) Information

We are the Rare Diseases Clinical Research Network (RDCRN), an initiative of the Office of Rare Diseases Research (ORDR), which is part of the National Institutes of Health’s (NIH’s) National Center for Advancing Translational Sciences (NCATS). 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, researchers and their teams work together with patient organizations to study nearly 200 rare diseases at clinical centers across the nation and worldwide. The NIH has awarded approximately $31 million in grants in fiscal year 2019 to 20 teams – including five new groups – of scientists, clinicians, patients, families and patient advocates to study a wide range of rare diseases through the RDCRN. An additional $7 million has been awarded to a separate data coordinating center to support these research efforts. The consortia will be researching: -Porphyria -Mitochondrial disorders -Vasculitis -Urea cycle disorders -Inherited neuropathies -Nephrotic syndrome -Brittle bone disorders -Dystonia -Developmental synaptopathies -Brain vascular malformations -ALS and related disorders -Disorders of glycosyllation -Congenital infections -Myasthenia gravis -Phenylketonurea -Lysosomal storage disorders -Leukodystrophies -Eosinophilic gastrointestinal disorders -Primary immune deficiency disorders -Genetic mucociliary disorders RDCRN focuses on clinical research and does not generally support clinical care outside of research activities. Please visit our website to search for information on the diseases we study. Beyond our network, the NIH offers many additional resources to support patients. You can reach the Genetic and Rare Diseases (GARD) Information Center at 1-888-205-2311. You can also search for diseases and access other resources at their website: https://ncats.nih.gov/gard.