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Archives for: February 19th, 2021

Head of the Herd: Chandra Clark, VHL Alliance

Written by Valaree DonFrancesco on February 19, 2021

At the Head of the Herd is… Chandra Clark, Executive Director, VHL Alliance. Today she shares her passion for incorporating diversity, equity, and inclusion within the rare disease space.

Prior to joining VHL Alliance, how did you get exposure to diversity, equity and inclusion (DEI)? How do those experiences carry over… Read More

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

Written by Valaree DonFrancesco 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

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

Voices of Rare Cancer: Emily’s Story

Written by Valaree DonFrancesco on September 18, 2020

An Unlikely Warrior

A warrior has been defined as a brave or experienced soldier or fighter. Hardly seems like me. I was small growing up, and always the last one picked for sports. I was also usually one of the kids that got picked on first, as I most likely to… Read More