Children’s Cardiomyopathy Awareness Month Urges Families to #KnowYourHeart this September
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Carmina Taylor of Penllyn, Penn., lost her son, Dorien, to sudden cardiac arrest at age 17
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Published 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”
Read morePublished February 28, 2014 by NORD
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 …
Continue reading “FDA Creates New Web-Based Educational Tool About the Agency”
Read morePublished December 16, 2013 by NORD
CAMBRIDGE, MA and DANBURY, CT—-Genzyme, a Sanofi company, and the National Organization for Rare Disorders (NORD) today announced the creation of a fund to pay for standard diagnostic testing for …
Read morePublished January 19, 2013 by NORD
Reprinted with permission from FDA Matters: By Steven Grossman The Orphan Drug Act (ODA) turned 30 this month, demonstrating that good laws really can have an enduring impact. Amidst the …
Continue reading “Orphan Drug Act at 30: Will Success Become Too Expensive?”
Read morePublished December 25, 2012 by NORD
Jack Klugman touched the lives of millions of Americans through his support for what ultimately became the Orphan Drug Act. By portraying on his Quincy, M.E. television show the plight …
Continue reading “NORD Issues Statement on the Death of Actor Jack Klugman”
Read morePublished December 6, 2012 by NORD
Everyone in the rare disease community who watched IBM’s “Watson” computer perform on “Jeopardy” early this year probably started to wonder about the potential of “Watson-like” systems to assist doctors …
Continue reading “Can IBM Watson Replace Dr. Dhaliwal? Probably Not!”
Read morePublished December 3, 2012 by NORD
FDA Commissioner Margaret Hamburg, MD, today announced a new public-private partnership to develop regulatory science that will speed patient access to new medical device technologies. This is the first public-private …
Continue reading “Patients Will Benefit From New Public-Private Partnership”
Read morePublished November 2, 2012 by NORD
According to a report on the BBC News web site today, the European Commission has — for the very first time anywhere in the Western world — given final approval …
Continue reading “Glybera Becomes First-ever Gene Therapy Approved in Europe”
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