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October 7, 2014

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

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

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

September 2, 2014

TOPIC: Advocacy, Featured News, Industry, Medical, Patient Stories, Patients & Members

Children’s Cardiomyopathy Awareness Month Urges Families to #KnowYourHeart this September

Posted at September 9, 2014 06:12 am by admin

Carmina Taylor of Penllyn, Penn., lost her son, Dorien, to sudden cardiac arrest at age 17. A gifted basketball player, Dorien had no warning signs of an underlying heart condition. Upon autopsy, Dorien was diagnosed with cardiomyopathy, an incurable and potentially life-threatening disease that affects how the heart muscle pumps blood through the body.

Dorien’s tragic death highlights a growing… Read More

July 11, 2014

TOPIC: Advocacy, Featured News

NORD at Capitol Hill Hearing: Patients Have Unique Perspective That Needs to be Heard

Posted at July 7, 2014 12:00 am by Mary Dunkle

 

NORD Board Member and Scientific Adviser Marshall Summar, MD, underscored the importance of the patient voice in his invited testimony on behalf of NORD at a July 11 hearing hosted by the House Energy & Commerce Committee Subcommittee on Health as part of the 21st Century Cures initiative. Read More