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March 2, 2018

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

Changing the Landscape of Rare Disease Research

Posted at March 3, 2018 03:09 pm by Laura Mullen

*The following is a a guest blog posting by NORD’s Director of Research Programs, Vanessa Boulanger, originally published 2/28/18 on PCORI.org at https://www.pcori.org/blog/changing-landscape-rare-disease-research?utm_source=general`

 

A rare disease, by definition, affects fewer than 200,000 individuals in the United States. Up to 30 million Americans have a rare disease, and most conditions are poorly understood. The National Organization for Rare Disorders (NORD), the… Read More

February 8, 2018

TOPIC: Featured News, Medical, Research

Current Funding Opportunity: NORD Research Grants for Rare Diseases

Posted at February 2, 2018 10:44 am by Christina Jensen

The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, has announced the availability of three research grants as part of its Rare Disease Research Grant Program. NORD encourages all U.S. and international researchers interested in studying one or more of these diseases to review… Read More

December 20, 2017

TOPIC: Featured News, Medical, Research

NORD Awards Five New Grants for Rare Disease Research

Posted at December 12, 2017 10:26 am by Christina Jensen

Washington, D.C., December 20, 2017 – The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, has announced five grantees of its 2017 Rare Disease Research Grant Program.

NORD’s Rare Disease Research Grant Program provides seed funding to academic scientists for translational or clinical studies related to the… Read More

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