Scroll
To Top

October 7, 2014

TOPIC: Featured News, Medical, Patients & Members, Research, Advocacy

Taking Action for ACD

Posted at October 10, 2014 02:37 pm by

On February 20th, 2013, Eliza and John Rista of Huntersville, North Carolina were blessed with an uncomplicated pregnancy, and a healthy, full-term baby boy weighing 8 pounds and 6 ounces. “Around midnight on the day of my son’s birth, my husband and… Read More

September 16, 2014

TOPIC: Featured News, Medical, Patients & Members, Research, Advocacy, Industry

Living with Blood Cancer

Posted at September 9, 2014 05:09 pm by

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 and my world was forever changed. During the last… Read More

August 18, 2014

TOPIC: Featured News, Medical, Patients & Members, Research

The Will to Live and the Strength for a Cure

Posted at August 8, 2014 02:44 pm by Lisa Sencen

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,… Read More

June 17, 2014

TOPIC: Featured News, Medical, Patients & Members, Research, Advocacy, Industry

NORD Recommendations for Advancing Drug Discovery, Development, and Delivery

Posted at June 6, 2014 05:24 pm by Mary Dunkle

On behalf of the millions of Americans who have diseases with little or no treatment, the National Organization for Rare Disorders (NORD) has submitted a seven-step plan to the 21st Century Cures Initiative outlining ways to improve the discovery, development, and delivery of medical treatments in the U.S. Read More