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Archives for: June 19th, 2019

The NORD Rare Disease Video Library Offers New Educational Resources

Written by Christina Jensen on June 19, 2019

New video library launched with funding from Incyte

Washington, DC, June 19, 2019–The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has launched the NORD Rare Disease Video Library, a resource featuring videos on rare diseases and… 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

Rare Disease Day

Written by admin on December 17, 2014

Join us on February 28th for this world wide event.

Living with Blood Cancer

Written by on September 16, 2014

Editor’s note: The following blog is being published to highlight Blood Cancer Awareness Month and MPN Awareness Day.  

I was diagnosed with essential thrombocythemia (ET) at age 16 after collapsing in my high school cafeteria. At that time, lab results showed I had a platelet count of over 1 million… Read More

Living With Essential Thrombocythemia (ET)

Written by Mary Dunkle on June 23, 2014

In 1992, Antje Hjerpe was diagnosed with a rare blood disease known as “essential thrombocythemia” or ET. A review of previous lab records showed that she had  been living with this disease for at least six years prior to diagnosis. Read More