?This network was created to share the experience, approaches, and tools for the study of rare diseases and to train the next generation of investigators,? said Barbara M. Alving, M.D., NCRR?s Acting Director. ?The adoption of standards and common data elements across diseases is groundbreaking, promotes cross-disease analysis, and provides a rich source of information to be mined by researchers around the world.?

Each consortium in the network includes active participation by the relevant patient advocacy groups. In addition, the Coalition of Patient Advocacy Groups (CPAG) was created to represent the more than 30 patient advocacy groups involved in the network. CPAG has been instrumental in outreach to the affected populations and gaining their input into the development of studies.

?In forming this coalition of rare disease groups, NIH has created a powerful vehicle for us to collaborate and communicate with one another that has already brought dividends,? said Patrick Cochran, CPAG Chair and founder of the Periodic Paralysis Association. ?Not only have we been able to share information and learn from each other, by working together we have also secured additional support from foundations and corporations.?

The RDCRN is funded by the ORD; NCRR; National Heart, Lung and Blood Institute; National Institute of Child Health and Human Development; National Institute of Neurological Disorders and Stroke; National Institute of Arthritis and Musculoskeletal and Skin Diseases; and National Institute of Diabetes and Digestive and Kidney Diseases — all components of NIH — an agency of the Department of Health and Human Services.

For more information about the RDCRN, please visit: http://www.ncrr.nih.gov/clinical/cr_rdcrn.asp.

NCRR provides laboratory scientists and clinical researchers with the environments and tools they need to understand, detect, treat, and prevent a wide range of diseases. This support enables discoveries that begin at a molecular and cellular level, move to animal-based studies, and then are translated to patient-oriented clinical research, resulting in cures and treatments for both common and rare diseases. NCRR connects researchers with one another and with patients and communities across the nation to harness the power of shared resources and research. For more information, visit www.ncrr.nih.gov.

The National Institutes of Health (NIH) — The Nation's Medical Research Agency — includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.