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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

May 30, 2014

TOPIC: Medical, Patients & Members, Industry

Images from the Portraits of Courage Celebration

Posted at May 5, 2014 02:52 pm by admin

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 supporters who made it all possible, and extend congratulations… Read More

February 28, 2014

TOPIC: Featured News, Patients & Members, Industry

FDA Creates New Web-Based Educational Tool About the Agency

Posted at February 2, 2014 05:08 pm by Mary Dunkle

The Food and Drug Administration’s Office of Orphan Products Development (OOPD), in collaboration with the FDA Center for Drug Evaluation and Research (CDER), has launched a web-based educational tool for rare disease patients, advocacy groups, researchers and industry on various FDA-related topics. (more…)