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Archives for: December 9th, 2020

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

Written by Valaree DonFrancesco on December 9, 2020

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

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 Valaree DonFrancesco 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

Alone we are rare. Together we are strong.®