The Will to Live and the Strength for a Cure
The day Joshua Frase was born, his parents Alison and Paul, were given grave news about…
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Published December 18, 2014 by NORD
The day Joshua Frase was born, his parents Alison and Paul, were given grave news about…
Read morePublished November 5, 2014 by NORD
Vanessa Devore’s father, Octavio Armenta was never diagnosed, and neither was her grandfather. Hailing from Guadalajara, Mexico, she represents a legacy of fighters against an unknown disease, as the pioneer in her …
Continue reading “Multiple Endocrine Neoplasia Type 1: One Family’s Fight”
Read morePublished October 7, 2014 by NORD
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. …
Continue reading “Taking Action for ACD”
Read morePublished September 25, 2014 by NORD
It’s truly amazing to hear everyone’s unique personal story on why medical research is important to them. Whether it’s a parent whose son or daughter is living with a rare …
Continue reading “Medical Research Should Be Everyone’s Priority”
Read morePublished September 16, 2014 by NORD
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 …
Continue reading “Living with Blood Cancer”
Read morePublished September 2, 2014 by NORD
Carmina Taylor of Penllyn, Penn., lost her son, Dorien, to sudden cardiac arrest at age 17
Read morePublished July 11, 2014 by NORD
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 …
Read morePublished July 9, 2014 by NORD
Katie Thortenson of Chicago is a proud mother of two healthy sons: her eldest, Jake, is 6, and her youngest, Drew, is 2, but often mistaken to be younger. When …
Continue reading “Knowing More About Noonan”
Read morePublished June 17, 2014 by NORD
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 …
Continue reading “NORD Recommendations for Advancing Drug Discovery, Development, and Delivery”
Read morePublished June 2, 2014 by NORD
National Organization for Rare Disorders Submits Comments in Response to Congressional 21st Century Cures Initiative “Call to Action” The National Organization for Rare Disorders (NORD) has submitted comments to the …
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