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November 19, 2018

TOPIC: Advocacy, Featured News, Get Involved

Orphan Drug Act Resolution Introduced in Congress

Posted at November 11, 2018 10:22 am by Christina Jensen

Senator Hatch and Representatives Lance and Butterfield introduced a resolution that heralds the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation.

This year marks the 35th anniversary for the ODA. That means 35 years of increased hope and treatments for the rare disease community. Prior to the ODA, there were only 34 therapies… Read More

November 9, 2018

TOPIC: Advocacy, Get Involved, Medical

Featured Student: Jennifer Shoskes

Posted at November 11, 2018 12:50 pm by Christina Jensen

NORD’s Educational Initiatives team spoke with Jennifer Shoskes, a Northeastern University graduate student and NORD Student Chapter Leader. In this interview, Jennifer talks about her inspiration for starting a NORD Student Chapter and where she hopes to see her career go working within the rare disease community.
For more information on NORD’s student programs, click… Read More

October 11, 2018

TOPIC: Advocacy, Featured News, Patients & Members, Press Releases

Patient Advocates Warn Against New Insurance & PBM Policy That Increases Patient Out-of-Pocket Drug Costs

Posted at October 10, 2018 09:28 am by Christina Jensen
NORD’s Director of State Policy Tim Boyd participated in a press briefing on copay accumulators yesterday, which was followed by the issuance of the following press release that includes links to further information on this important topic.


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September 12, 2018

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

Three Big Reasons Not to Miss the 2018 NORD Rare Summit

Posted at September 9, 2018 04:35 pm by Christina Jensen
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August 29, 2018

TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members, Press Releases

2018 NORD Rare Summit to Feature Distinguished Speakers Discussing a New Era of Patient-Focused Innovation

Posted at August 8, 2018 10:48 am by Christina Jensen

Washington, D.C., August 29, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced some of the speakers confirmed for the 2018 NORD Rare Diseases & Orphan Products Breakthrough Summit, to be held October 15-16 in Washington, D.C…. Read More