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Dec. 9, 2020

TOPIC: Featured News, Patients & Members, Research, Advocacy, RDCA-DAP

Patient Advocacy Group Leaders Tell How Data Sharing Can Help with Understanding Rare Diseases in New Video

Posted by Laura Mullen

Natural history studies provide health care professionals and researchers with first-hand information about people living with rare diseases and give insight into how rare diseases present, progress over time and impact patients. Data sharing supports patients by helping the community understand their disease better, which helps improve clinical care and can accelerate the development of new treatments.  

Learn more in How Does Data Sharing Improve the Understanding of Rare Diseases? It’s the second installment in NORD and C-Path’s new Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) video series on the importance of patient-reported data to progress in rare disease, featuring three patient advocacy group leaders. 

To learn more about the RDCA-DAP Initiative, visit our website: https://rarediseases.org/rdca-dap/