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Archives for: September 14th, 2017

Nearly 140 Patient Organizations Support the Orphan Drug Tax Credit

Written by Christina Jensen on September 14, 2017

Today, NORD joined nearly 140 patient organizations in sending a letter to Congress in support of the Orphan Drug Tax Credit (ODTC). We are extremely grateful to all those organizations that joined us and lent their support. It is vital that the Orphan Drug Tax Credit remains in place, and… Read More

FDA Announces First Gene Therapy in U.S.

Written by Mary Dunkle on August 31, 2017

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… Read More

NORD Issues Statement in Response to the Signing by President Trump of the Food and Drug Administration Reauthorization Act of 2017

Written by Christina Jensen on August 21, 2017

Washington, D.C., August 21, 2017Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today issued the following statement in response to the signing by President Trump of the Food and Drug Administration… Read More

Advance the Dialogue at the NORD Rare Summit

Written by Christina Jensen on August 15, 2017
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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… Read More

NORD Issues Statement on the Senate passage of the Food and Drug Administration Reauthorization Act of 2017

Written by Lisa Phelps on August 3, 2017

Washington, D.C., August 3, 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 Senate passage of the Food and Drug Administration Reauthorization Act of 2017:

“Today the Senate joined the House in… Read More