Published June 14, 2013 by NORD
Yesterday’s ruling by the U.S. Supreme Court that human genes are a product of nature and cannot be patented is being hailed by many as a victory for patients and …
Continue reading “Supreme Court Decision Consistent With Longstanding NORD Position”
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 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 29, 2012 by NORD
December 26 is the deadline for submitting comments on the proposed rule for Essential Health Benefits released recently by the Department of Health and Human Services (HHS). Essential Health Benefits …
Read morePublished November 12, 2012 by NORD
Two weeks ago, as my flight landed in Boston, I stepped outside of the plane with a long tube in my arm, inside of which was a very special poster. …
Continue reading “The Story Behind the Rare Disease Day School Curriculum”
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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