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
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
Written by Lisa Sencen on January 21, 2016
Join us for a nationwide conversation about rare diseases on:
Tuesday, March 1, 2016
1:00 – 2:00 p.m. EST
In celebration of Rare Disease Day®, NORD will co-sponsor a tweetchat on the topic of rare diseases with Dr. Richard Besser, Chief of the ABC News… Read More
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
Written by Mary Dunkle on December 1, 2014
The National Organization for Rare Disorders (NORD) focused a spotlight on individuals and families who display great courage as they live with rare diseases at its Portraits of Courage Celebration last night.