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October 8, 2018

TOPIC: Medical, Patients & Members, Sticky Posts for Homepage

NORD Seeks Proposals for CME Partnership

Posted at October 10, 2018 10:09 am by Christina Jensen

The National Organization for Rare Disorders is seeking a partner to collaborate on the development of educational resources for medical professionals. NORD has published a Request for Proposals inviting accredited CME providers to respond with proposals by November 16.

 

Celebrating its 35th anniversary… Read More

October 3, 2018

TOPIC: Featured News, Press Releases, Research, Sticky Posts for Homepage

Five Years of Patient Registry Success: NORD’s IAMRARE™ Registry Program Celebrates New Partnerships and Models of Engagement  

Posted at October 10, 2018 09:21 am by Laura Mullen

Washington, D.C., October 3, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today is celebrating five years of patient registry success with the announcement of a new multi-stakeholder model of engagement in collaboration with the Foundation for Prader-Willi Research and Zafgen, Inc.

 

In the rare disease space, with… Read More

July 19, 2018

TOPIC: Featured News, Industry, Medical, Patients & Members, Press Releases, Research, Sticky Posts for Homepage

NORD’s RareEDU™ Launches Video Addressing a Topic Vital to Today’s Rare Disease Community, Gene Therapy: Your Questions Answered

Posted at July 7, 2018 10:17 am by Christina Jensen

Washington, D.C., July 19, 2018—The National Organization for Rare Disorders (NORD) today launched Gene Therapy: Your Questions Answered, a new video from its RareEDU educational program addressing some of the most commonly asked questions from patients and caregivers on the topic.  It is available for viewing here Read More

August 15, 2017

TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members, Sticky Posts for Homepage

Advance the Dialogue at the NORD Rare Summit

Posted at August 8, 2017 09:49 am by Christina Jensen

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