Written by Christina Jensen 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.
Written by on July 16, 2014
The diagnosis of primary myelofibrosis (MF), one of three main myeloproliferative neoplasms (MPNs), came as a huge surprise for Bill Erickson in May 2012. According to the MPN Research Foundation, patients with MF have scar tissue buildup in their bone marrow, which prevents normal blood cells from being produced. Since blood cell… Read More
Written by admin on May 30, 2014
NORD’s Portraits of Courage Celebration on May 8, 2014, highlighted the many ways in which patients and caregivers display great dignity and grace in living with challenging rare diseases. Patients and families featured in the Portraits of Courage gallery providing an inspiring presence at the event.
We thank our sponsors and… Read More