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Dec. 3, 2020

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

New Video Series Featuring Patient Advocacy Group Leaders, “The Importance of Patient-Reported Data to Progress in Rare Disease,” Launched by NORD, C-Path

Posted by Valaree DonFrancesco

As the primary benefactors of drugs that treat rare diseases, patients and caregivers must play a role in the drug development process. Patients and caregivers bring a human perspective to the drug development process and can guide researchers toward beneficial treatment outcomes. Hear from Davelyn Hood (Board President, Congenital Hyperinsulinism International and PI, CHI HI Global Registry)Joshua Mann (Director of Engagement, VHL Alliance), and Jessica Bohonowych (Associate Director of Research Programs, Foundation for Prader-Wili Research) on why patient involvement in drug development is critical to progress in rare disease in How Can Patients and Advocates Help Accelerate Drug Development? It is the first installment in NORD and C-Path’s new Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) video series featuring the three patient advocacy group leaders. 

To learn more about the RDCA-DAP initiative, visit our website: