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 their newborn’s life
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Published December 23, 2014 by NORD
The day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life
Read morePublished December 23, 2014 by NORD
I’m honored to be speaking at the NORD Breakthrough Summit on Rare Diseases and Orphan Products in October
Read morePublished December 23, 2014 by NORD
Alena Galan is a happy 16-year old girl full of life and wise beyond her years. She can light up a room with her quick-witted charm and energetic personality. She …
Continue reading “Life is a Special Occasion”
Read morePublished December 18, 2014 by NORD
The day Joshua Frase was born, his parents Alison and Paul, were given grave news about…
Read morePublished December 1, 2014 by NORD
Join us on May 2015 in Washington DC to celebrate the successes of the rare disease community.
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 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 May 30, 2014 by NORD
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 …
Continue reading “Images from the Portraits of Courage Celebration”
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