Posted at September 16, 2014 5:09 pm by Stephanie Cindric
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 18 years, I have traveled along the highs and lows of platelet counts, treatments, and the emotions of this blood cancer. ET has created some of the worst fears I’ve had in my life, but has also given me more purpose than I could have hoped for at a young age. read more >
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. read more >
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 >
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 to our honorees for their accomplishments. NORD will be displaying the Portraits of Courage gallery at other events throughout the year. View our list of sponsors and read the press release listing our honorees.
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.