November 10, 2017
TOPIC: Advocacy, Featured News, Industry, Patients & Members, Research
Posted at November 11, 2017 02:26 pm by Christina Jensen
Washington, D.C., November 10, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the release of the Senate Finance Committee’s proposal to substantially weaken the Orphan Drug Tax Credit (ODTC) within its Tax Cuts and Jobs Act:
“On behalf of the 30 million… Read More
August 31, 2017
TOPIC: Events, Featured News, Industry, Medical, Patients & Members, Research
Posted at August 8, 2017 12:39 pm by Mary Dunkle
In an action the rare disease community has been eagerly awaiting, the Food and Drug Administration (FDA) has announced the first-ever approval of a gene therapy in the U.S. The product is Kymriah, and it is approved to treat certain children and young adults who have a cancer of blood and bone marrow known as acute lymphoblastic leukemia (ALL).
Approximately… Read More
August 15, 2017
TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members, Sticky Posts for Homepage
Posted at August 8, 2017 09:49 am by Christina Jensen
It has been an interesting year for healthcare reform and the Orphan Drug Act, and as I’m sure you are aware; the conversation isn’t over yet. Major changes to healthcare and tax reform continue to be discussed and that is why it is so important that now, more than ever, rare disease stakeholders come together to advance the dialogue on these… Read More
July 20, 2017
TOPIC: Events, Featured News, Get Involved, Industry, Medical, Research
Posted at July 7, 2017 09:54 am by Christina Jensen
Washington, D.C. July 19, 2017 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced two keynote speakers for its 2017 Rare Diseases and Orphan Products Breakthrough Summit, to be held October 16-17 in Washington, D.C.
The meeting, which takes place on an annual basis, brings… Read More
May 8, 2017
TOPIC: Featured News, Industry, Patients & Members
Posted at May 5, 2017 02:54 pm by Amanda DeBellis
Washington, D.C., May 8, 2017—On Friday, the National Health Council (NHC) and the National Organization for Rare Disorders (NORD), submitted a letter from more than 120 patient advocacy organizations to members of Congress urging them to swiftly reauthorize the FDA user fees.
The letter, in part, reads, “The chronic and rare disease and disability patient communities… Read More