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June 13, 2017

TOPIC: Medical, Press Releases, Research, Sticky Posts for Clinicians and Researchers

NORD Publishes New Rare Disease Report on CARD9 Deficiency

Posted at June 6, 2017 09:28 am by Christina Jensen
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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

May 30, 2017

TOPIC: Featured News, Medical, Research, Sticky Posts for Clinicians and Researchers

NORD Publishes Report on Hereditary Sensory Autonomic Neuropathy Type 1E

Posted at May 5, 2017 09:23 am by Christina Jensen
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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 1E (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

January 11, 2017

TOPIC: Advocacy, Medical, Press Releases

Orphan Drugs Represent 41 Percent of All New Medications

Posted at January 1, 2017 10:57 am by Jennifer Huron
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Washington, D.C., January 11, 2017—Data released by the U.S. Food and Drug Administration (FDA) show that 9 of the 22 new medications approved in 2016, or 41 percent, are orphan drugs to treat rare diseases.

“The percentage of orphan drugs approved in recent years by FDA remains high and this is welcome news for the 30 million Americans with rare diseases,” said Peter L. Saltonstall,… Read More

October 26, 2016

TOPIC: Medical, Press Releases

NORD Publishes Physician Guide to Cutaneous T-Cell Lymphoma

Posted at October 10, 2016 10:52 am by Jennifer Huron
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Washington, D.C., October 26, 2016—As part of its ongoing series to promote physician awareness of rare diseases, the National Organization for Rare Disorders has published The NORD Physician Guide to Cutaneous T-Cell Lymphoma (CTCL). This new resource is available free online to medical professionals around the world.

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

August 18, 2016

TOPIC: Events, Get Involved, Industry, Medical, Patients & Members

Key Dates Approaching for NORD Summit

Posted at August 8, 2016 02:50 pm by Christina Jensen
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Advanced Pricing Deadline is Friday, August 26

Register for NORD’s annual Rare Diseases & Orphan Products Breakthrough Summit (Oct. 17-18, Arlington, VA) by August 26 and save up to $400. More specific pricing information for the summit can be found here.

Poster Abstracts are due Friday, August 19

Calling all researchers –  the theme for the 2016 poster session at… Read More