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October 10, 2017

TOPIC: Press Releases

NORD Announces Three New Hires to Lead Research, Education and Business Development Programs

Posted at October 10, 2017 08:22 am by Jennifer Huron

Danbury, CT, October 10, 2017The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization dedicated to helping the 30 million Americans with rare diseases, announces the appointment of three new hires: Vanessa Boulanger, Director of Research Programs; Sika Dunyoh, Director of Education Programs; and Alexa Moore, Vice President of Development.

“As NORD continues its efforts to help patients… Read More

September 19, 2017

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

NORD Issues Statement Opposing the “Graham-Cassidy” ACA Replacement Plan

Posted at September 9, 2017 01:20 pm by Christina Jensen

The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement opposing the “Graham-Cassidy” plan to repeal and replace the Affordable Care Act (ACA):

“The Senate is currently considering a proposal put forward by Senators Graham, Cassidy, Heller, and Johnson that would repeal and replace the Affordable… Read More

September 12, 2017

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

NORD Publishes New Rare Disease Report on Shprintzen Goldberg Syndrome (SGS)

Posted at September 9, 2017 09:05 am by Christina Jensen

Washington, D.C., September 15, 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 Shprintzen Goldberg Syndrome (SGS). 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,… Read More

August 28, 2017

TOPIC: Featured News, Medical, Press Releases

NORD Publishes New Report on Sitosterolemia

Posted at August 8, 2017 02:15 pm by Christina Jensen

Washington, D.C., August 28, 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 Sitosterolemia. This new resource is available free online to individuals around the world.

Read More

August 3, 2017

TOPIC: Advocacy, Events, Featured News, Press Releases

NORD Issues Statement on the Senate passage of the Food and Drug Administration Reauthorization Act of 2017

Posted at August 8, 2017 01:10 am by Lisa Phelps

Washington, D.C., August 3, 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 Senate passage of the Food and Drug Administration Reauthorization Act of 2017:

“Today the Senate joined the House in overwhelmingly passing the Food and Drug Administration Reauthorization Act… Read More