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December 1, 2014

TOPIC: Featured News, Patients & Members, Industry

NORD Celebration Highlights the Courage of Children and Adults Living with Rare Diseases

Posted at December 12, 2014 05:52 pm by Mary Dunkle

 

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.

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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

September 2, 2014

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

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

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