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May 21, 2018

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

Save the Date for NORD’s 2018 Rare Summit

Posted by Christina Jensen

We are looking forward to bringing all stakeholders in rare diseases together once again for our annual Rare Diseases and Orphan Products Breakthrough Summit. We hope to see you there! Please mark the details below in your calendars and keep an eye out for a registration announcement in early June.


Rare Diseases &… Read More

May 15, 2018

TOPIC: Featured News

NORD statement in response to American Patients First, the Trump Administration Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs

Posted by Laura Mullen

The National Organization for Rare Disorders (NORD) today issued the following statement in response to American Patients First, the Trump Administration Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs:

Patients with rare diseases are frequently disproportionately affected by high drug prices.  Rare diseases tend to be chronic and medications can be needed for the life… Read More

May 10, 2018

TOPIC: Events, Featured News, Get Involved

Watch LIVE: NORD’s 35th Anniversary & Rare Impact Awards Celebration

Posted by Christina Jensen
NORD-35thAnniv-StickyPost-238x205-WatchLive

NORD’s 35th Anniversary Celebration presenting the Rare Impact Awards is only one week away, happening next Thursday, May 17, at the Andrew W. Mellon Auditorium in Washington, D.C. If you are not able to attend in person, please join us for a special webcast of the event using Facebook Live!

How to Watch:

  1. On Thursday, May 17 at… Read More

May 7, 2018

TOPIC: Advocacy, Featured News

NORD 35th Anniversary Blog Series: The Early Years (1980s)

Posted by Jennifer Huron

2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary.  For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate.  Our policy, research and other efforts have played a significant role over the years, advocating for what matters most and making sure patients have a… Read More

May 4, 2018

TOPIC: Advocacy, Featured News, Patient Stories, Patients & Members

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

Posted by Laura Mullen

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 service to all of the rare disease community, including… Read More