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November 13, 2017

TOPIC: Featured News, Medical, Research

NORD Publishes New Educational Resource on Li-Fraumeni Syndrome

Posted at November 11, 2017 12:21 pm by Christina Jensen

Washington, D.C., November 13, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Li-Fraumeni Syndrome. This new resource is available free online to individuals around the world.

As the primary advocacy organization in the U.S. for people who have rare diseases, NORD provides… Read More

November 10, 2017

TOPIC: Advocacy, Featured News, Industry, Patients & Members, Research

NORD Issues Statement in Response to Senate Finance Committee’s Proposal to Weaken the Orphan Drug Tax Credit

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

October 5, 2017

TOPIC: Medical, Research

NORD Publishes New Report on RYR-1 Related Diseases

Posted at October 10, 2017 03:11 pm by Christina Jensen

Washington, D.C., October 5, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on RYR-1-Related Diseases. This new resource is available free online to individuals around the world.

As the primary advocacy organization in the U.S. for people who have rare diseases, NORD provides… Read More

August 31, 2017

TOPIC: Events, Featured News, Industry, Medical, Patients & Members, Research

FDA Announces First Gene Therapy in U.S.

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

July 25, 2017

TOPIC: Featured News, Medical, Patients & Members, Research

NORD Publishes New Rare Disease Report on Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL)

Posted at July 7, 2017 03:41 pm by Christina Jensen

Washington, D.C., July 25, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL). This new resource is available free online to individuals around the world.

As the primary advocacy organization in the U.S. for people who have… Read More