As a 2020 scholarship recipient, I was able to attend the NORD Rare Diseases and Orphan Products and Breakthrough Summit in October and to hear from inspiring patients, hard-working medical professionals and research experts. Specifically, I was very drawn to the “Unlocking the Power of Health Care Data” panel,… Read More
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
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… Read More
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
TUCSON, Ariz. and WASHINGTON, D.C. October 21, 2020 — The Critical Path Institute (C-Path) and the National Organization for Rare Disorders (NORD®) hosted the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) 2020 Virtual Workshop on Monday, October 19. The platform, funded by a cooperative agreement through… Read More
