News - Page 3 of 68 - NORD (National Organization for Rare Disorders)

June 13, 2017

TOPIC: Medical, Press Releases, Research

NORD Publishes New Rare Disease Report on CARD9 Deficiency

Posted by Christina Jensen

Washington, D.C., June 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 CARD9 Deficiency. 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

Tags: CARD9 Deficiency, Dr. Donald C. Vinh, Marsha Lanes, McGill University Health Centre Research Institute, Melanie Langelier RN, Rare Disease Reports

May 31, 2017

TOPIC: Featured News, Press Releases

NORD Releases Statement on Orphan Drug Assessment & Pricing Summit

Posted by Amanda DeBellis

Washington, D.C., May 31, 2017—NORD released the following statement in advance of today’s “Orphan Drug Assessment and Pricing Summit” held by the Institute for Clinical and Economic Review (ICER):

“We are pleased to participate in ICER’s ‘Orphan Drug Assessment and Pricing Summit’, and look forward to providing the rare disease patient’s viewpoint on the importance of orphan… Read More

Tags: cost of orphan drugs, ICER, orphan drugs, press release

May 30, 2017

TOPIC: Featured News, Medical, Research

NORD Publishes Report on Hereditary Sensory Autonomic Neuropathy Type 1E

Posted by Christina Jensen

Washington, D.C., May 30, 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 Hereditary Sensory Autonomic Neuropathy Type 1 E (HSAN1E). This new resource is available free online to individuals around the world.

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

Tags: DNMT1 gene, Dr. Christopher Klein, genetic disorder, Hereditary Sensory Autonomic Neuropathy Type 1E, HSAN1E, HSAN1E Society, Marsha Lanes, mayo-clinic

May 10, 2017

TOPIC: Advocacy, Featured News

NORD Issues Statement on Confirmation of New FDA Commissioner, Dr. Scott Gottlieb

Posted by Christina Jensen

Washington, D.C., May 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 on the confirmation by the U.S. Senate of Scott Gottlieb, M.D., as Commissioner of the Food and Drug Administration (FDA):

“We at the National Organization for Rare Disorders look forward to working with Dr. Scott… Read More

Tags: Commissioner of the FDA, Dr. Scott Gottlieb, FDA, Food and Drug Administration, U.S. Senate

May 8, 2017

TOPIC: Featured News, Industry, Patients & Members

Sign-on letter from 120 patient organizations urging Congress to reauthorize FDA User Fee Agreements

Posted 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

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June 13, 2017

NORD Publishes New Rare Disease Report on CARD9 Deficiency

Posted by Christina Jensen

May 31, 2017

NORD Releases Statement on Orphan Drug Assessment & Pricing Summit

Posted by Amanda DeBellis

May 30, 2017

NORD Publishes Report on Hereditary Sensory Autonomic Neuropathy Type 1E

Posted by Christina Jensen

May 10, 2017

NORD Issues Statement on Confirmation of New FDA Commissioner, Dr. Scott Gottlieb

Posted by Christina Jensen

May 8, 2017

Sign-on letter from 120 patient organizations urging Congress to reauthorize FDA User Fee Agreements

Posted by Amanda DeBellis

Topics

Alone we are rare. Together we are strong.®