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Dec. 16, 2020

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

In Final Installment of Video Series, Patient Advocacy Group Leaders Share Thoughts on the Importance of Participation in RDCA-DAP

Posted by Valaree DonFrancesco

The Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) initiative will allow patient organizations to leverage the data they have collected to accelerate understanding of disease progression, clinical outcome measures and biomarkers for rare diseases. It will increase the efficiency of data analysis, and hopefully expedite treatments for rare diseases individually and for symptoms that are common across multiple rare disorders. In the third and final installment in NORD and C-Path’s video series on the importance of patient-reported data to progress in rare disease, leaders from the VHL Alliance, Congenital Hyperinsulinism International and the Foundation for Prader-Willi Research reflect on the questionWhy IIt Important to Your Organization to Be Involved with RDCA-DAP?  

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