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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

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

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

June 4, 2014

TOPIC: Medical, Patients & Members, Research

Thoughtful Biosimilars Policy Is Best Way to Ensure Optimum Patient Outcomes

Posted at June 6, 2014 01:47 pm by

Biologic therapies have been lifesaving and life changing for the patients we represent – more than 30 million Americans with more than 7,000 rare diseases. Literally, hundreds of thousands of rare disease patients have found their lives bettered by biologics and we are collectively grateful to the innovators and companies that have made this possible. Read More