Interested in learning more about the Rare Diseases Clinical Research Network (RDCRN)’s fourth funding cycle and hearing stories of patient engagement in research? Plan to visit the RDCRN’s poster and exhibit table at Rare Disease Day at NIH on Friday, February 28 in Bethesda, Maryland. If you’re not able to attend in person, follow the action on social media using the hashtags #RDDNIH and #RDCRNPatientPartners.
Rare Disease Day takes place worldwide, typically on or near the last day of February each year, to raise awareness among policymakers and the public about rare diseases and their impact on patients’ lives. The NIH’s National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center sponsor Rare Disease Day at NIH as part of this global observance.
The RDCRN funds research across 23 active consortia—national teams of researchers, patients and clinicians—focused on groups of rare disorders. The goal is to advance the diagnosis, management, and treatment of rare diseases with a focus on clinical trial readiness.
Attendees visiting the RDCRN booth can talk with Eileen King, PhD, of Cincinnati Children’s Hospital Medical Center, who is co-leading the RDCRN’s Data Management and Coordinating Center.
Our patient stories will be focusing on an important feature of the RDCRN: The direct involvement of patient advocacy groups in network operations, activities, and strategy. Each rare disease research group (consortium) in the network includes relevant patient groups in consortium membership and activities. Their representatives advise the researchers within their consortium and collectively represent the perspectives and interests of patients with rare diseases.
Registration for Rare Disease Day at NIH is free and open to the public. This year’s event will feature interactive panel discussions, inspiring stories through TED-style talks, posters and exhibits by rare disease groups and researchers, and artwork and tours of the NIH Clinical Center and National Library of Medicine.
The Rare Diseases Clinical Research Network (RDCRN) is an initiative of the Office of Rare Diseases Research (ORDR) at the National Institutes of Health’s National Center for Advancing Translational Sciences (NCATS). Established by Congress under the Rare Diseases Act in 2002, RDCRN fosters collaborative research among scientists to better understand how rare diseases progress and to develop improved approaches for diagnosis and treatment. It currently funds research across 23 active consortia—national teams of researchers, patients and clinicians—focused on groups of rare disorders. The network, now in its fourth five-year funding cycle, is a partnership with funding and programmatic support provided by entities across NIH, including the National Institute of Allergy and Infectious Diseases, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Neurological Disorders and Stroke, the National Heart, Lung, and Blood Institute, the National Institute of Arthritis and Musculoskeletal and Skin Diseases, the National Institute of Diabetes and Digestive and Kidney Diseases, the National Institute of Dental and Craniofacial Research, the National Institute of Mental Health and the Office of Dietary Supplements. Follow us on Twitter, Facebook and LinkedIn.
