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June 20, 2018

TOPIC: Advocacy, Featured News

Last Rare Disease Day Event of 2018 a Success in Pennsylania

Posted by Laura Mullen

*The following article ran 6/19/2018 via Pennsylvania Legislative Services, an online legislative research, tracking, media, and analysis service providing access to Pennsylvania’s policy making process.

SUPPORTERS, LAWMAKERS CELEBRATE RARE DISEASE AWARENESS DAY

By Derek Snyder, Pennsylvania Legislative Services | June 19, 2018

Dozens of advocates joined in the Capitol this morning to support PA National… Read More

June 15, 2018

TOPIC: Advocacy, Featured News

NORD Meets with HHS Secretary Azar to Discuss Needs of Rare Disease Patients

Posted by Laura Mullen

Washington, D.C., June 15, 2018—On Wednesday, staff from the National Organization for Rare Disorders (NORD) met with Health and Human Services (HHS) Secretary Alex Azar to discuss the needs of rare disease patients. The meeting covered orphan drug innovation, growing patient involvement at the Food and Drug Administration (FDA), and the mounting challenges of access to quality insurance… Read More

June 4, 2018

TOPIC: Advocacy, Featured News, Medical

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

Posted 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 31, 2018

TOPIC: Events, Get Involved

A Celebration of NORD’s 35th Anniversary

Posted by Christina Jensen

On Thursday, May 17 at the Andrew W. Mellon Auditorium in Washington, D.C. the rare disease community came together to celebrate NORD’s 35th Anniversary and to recognize the amazing accomplishments of the 2018 honorees during NORD’s 35th Anniversary Celebration presenting the Rare Impact Awards. 

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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 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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