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Archives for: May 31st, 2018

A Celebration of NORD’s 35th Anniversary

Written by Christina Jensen on May 31, 2018

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… Read More

NORD’s 35th Anniversary & Rare Impact Awards Celebration

Written by Christina Jensen on May 17, 2018

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NORD’s 35th Anniversary Celebration presenting the 2018 Rare Impact Awards will be held on May 17, 2018, in Washington, D.C. at the Andrew W. Mellon Auditorium. This event will celebrate the efforts to help the 30 million Americans with rare diseases… Read More

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

Written by Laura Mullen on May 4, 2018

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… Read More

Changing the Landscape of Rare Disease Research

Written by Laura Mullen on March 2, 2018

*The following is a a guest blog posting by NORD’s Director of Research Programs, Vanessa Boulanger, originally published 2/28/18 on PCORI.org at https://www.pcori.org/blog/changing-landscape-rare-disease-research?utm_source=general`

 

A rare disease, by definition, affects fewer than 200,000 individuals in the United States. Up to 30 million Americans have a rare disease, and most conditions are poorly… Read More

Together, we can be stronger for those that need us.

Written by Christina Jensen on December 14, 2017
Dear Rare Disease Community Member,
Wow! What an exciting time to be involved with rare diseases. Never before has there been so much progress in diagnosing rare diseases and in the availability of new treatments! 2017 promises to be another record year in terms of new therapies becoming available for patients with rare… Read More