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August 28, 2017

TOPIC: Featured News, Medical, Press Releases

NORD Publishes New Report on Sitosterolemia

Posted 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.

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August 23, 2017

TOPIC: Patients & Members

Recap: NIH NCATS Day – Partnering with Patients for Smarter Science at the NIH

Posted by Christina Jensen

In advance of today’s Members-Only Webinar with the Director of NIH NCATS, Dr. Christopher Austin, Swapna Kakani, a summer intern with NORD, wrote the article below highlighting her experience in June at the NIH NCATS Day – Partnering with Patients for Smarter Science. We look forward to today’s special webinar with our network of Member Organizations… Read More

August 21, 2017

TOPIC: Advocacy, Featured News, Medical

NORD Issues Statement in Response to the Signing by President Trump of the Food and Drug Administration Reauthorization Act of 2017

Posted by Christina Jensen

Washington, D.C., August 21, 2017Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today issued the following statement in response to the signing by President Trump of the Food and Drug Administration Reauthorization Act of 2017:

“We thank President Trump for signing… Read More

August 15, 2017

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

Advance the Dialogue at the NORD Rare Summit

Posted by Christina Jensen
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It has been an interesting year for healthcare reform and the Orphan Drug Act, and as I’m sure you are aware; the conversation isn’t over yet. Major changes to healthcare and tax reform continue to be discussed and that is why it is so important that now, more than ever, rare disease stakeholders come together to advance the dialogue on these… 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 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