Resource Summary Report  New Search

URL: http://rarediseasesnetwork.epi.usf.edu/index.htm

Proper Citation: Rare Diseases Clinical Research Network (RRID:SCR_004372)

Description: The Rare Diseases Clinical Research Network (RDCRN) was created to facilitate collaboration among experts in many different types of rare diseases. Our goal is to contribute to the research and treatment of rare diseases by working together to identify biomarkers for disease risk, disease severity and activity, and clinical outcome, while also encouraging development of new approaches to diagnosis, prevention, and treatment. The Rare Diseases Clinical Research Network (RDCRN) is made up of 19 distinctive consortia that are working in concert to improve availability of rare disease information, treatment, clinical studies, and general awareness for both patients and the medical community. The RDCRN also aims to provide up-to-date information for patients and to assist in connecting patients with advocacy groups, expert doctors, and clinical research opportunities.

Abbreviations: RDCRN

Resource Type: data or information resource, portal, community building portal, topical portal, disease-related portal, patient-support portal

Keywords: rare disease, disease, disorder, angelman syndrome, rett syndrome, prader-willi syndrome, autonomic rare disease, clinical research, brain vascular malformation, neurologic channelopathy, spinocerebellar ataxia, chronic graft versus host disease, dystonia, genetic disorder, mucociliary clearance, inherited neuropathy, lysosomal disease, bone marrow failure, cholestatic liver disease, rare genetic steroid disorder, nephrotic syndrome, mitochondrial disease, porphyrias, primary immune deficiency treatment, rare kidney stone, salivary gland carcinoma, sterol and isoprenoid disease, urea cycle disorder, vasculitis, rare lung disease, rare thrombotic disease