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Archives for: January 21st, 2016

Join NORD and ABC News for a Rare Disease Day Tweetchat on March 1

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

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

Illinois Man Uses His Myelofibrosis Story to Help Others

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

Images from the Portraits of Courage Celebration

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