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Archives for: October 29th, 2020

Krabbe Disease: Externally-Led Patient-Focused Drug Development Meeting

Written by Valaree DonFrancesco on October 29, 2020

 

NORD invites you to a virtual externally-led Patient-Focused Drug Development (EL-PFDD) meeting on Krabbe disease, taking place Thursday, October 29, 2020.

If you are a patient, family member or caregiver affected by Krabbe disease, this is an important opportunity to have your voice heard. 

EL-PFDD… Read More

COVID-19 Resources for Non-profit Leaders and the Community

Written by Valaree DonFrancesco on March 20, 2020

The health and safety of those with rare diseases and their caregivers are always our top priorities at the National Organization for Rare Disorders (NORD). We know our members are working tirelessly to support their communities during this global crisis. Rare disease organizations have felt the impact of the coronavirus… Read More

The Will to Live and the Strength for a Cure

Written by admin on December 18, 2014

The day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life – he most likely would not survive that day. His weakened muscles could not function normally which affected his ability to breathe on his own. Miraculously, Joshua survived, and when he… Read More