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Archives for: December 16th, 2020

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

Written by Laura Mullen on December 16, 2020

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… Read More

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

Written by Laura Mullen on December 3, 2020

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… Read More

NORD Invites Video Submissions on Advocacy Experience

Written by Lisa Sencen on August 1, 2018

Washington, D.C., August 1, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has issued a call for video submissions on the patient advocacy experience. The videos will be the latest part of a year-long campaign marking… Read More