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June 4, 2018

TOPIC: Advocacy, Featured News, Medical

NORD Issues Statement on Increasing Use of CoPay Accumulator Programs in Health Plans

Posted at June 6, 2018 09:34 am by Christina Jensen
Washington, D.C., June, 4, 2018 —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 increasing use of copay accumulator programs in health plans:
“Recently, a number of health plans have started implementing, what are broadly known as, ‘copay accumulator programs.’ These programs prevent… Read More

May 29, 2018

TOPIC: Advocacy, Featured News, Press Releases

NORD Launches RareInsights, New Initiative to Support Data-Driven Advocacy, and Presents 5 Myths About Orphan Drugs and the Orphan Drug Act

Posted at May 5, 2018 11:07 am by Laura Mullen

Washington, D.C., May 30, 2018—The National Organization for Rare Disorders (NORD) today launched RareInsights™, its new initiative to expand public knowledge of rare diseases and translate that knowledge into real-world solutions for patients and families, and kicked off the program with the  infographic 5 Myths About Orphan Drugs and the Orphan Drug Act.

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May 22, 2018

TOPIC: Advocacy, Featured News

NORD Issues Statement Regarding House Passage of the Right to Try Act (S.204)

Posted at May 5, 2018 06:23 pm by Christina Jensen
Washington, D.C., May 22, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement following today’s passage of the Right to Try Act (S.204) in the House of Representatives:
“Today, the House of Representatives passed the Right to Try Act (S.204). We at the National… Read More

May 7, 2018

TOPIC: Advocacy, Featured News

NORD 35th Anniversary Blog Series: The Early Years (1980s)

Posted at May 5, 2018 10:47 am by Jennifer Huron

2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary.  For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate.  Our policy, research and other efforts have played a significant role over the years, advocating for what matters most and making sure patients have a… Read More

May 4, 2018

TOPIC: Advocacy, Featured News, Patient Stories, Patients & Members

35 Ways and Growing: NORD’s Service to the Rare Disease Community

Posted at May 5, 2018 11:10 am by Laura Mullen

For 35 years, NORD has been leading the fight to improve the lives of patients and families with rare diseases. We do this by supporting patients and organizations, accelerating research, providing education, disseminating information, raising public awareness, and driving public policy. The following are 35 examples of how NORD provides service to all of the rare disease community, including… Read More