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March 14, 2018

TOPIC: Advocacy, Featured News

NORD Issues Statement Regarding House Vote on Right to Try

Posted by Christina Jensen

Washington, D.C., March 14, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement in regards to last night’s vote in the House of Representatives on the latest version of the Right to Try Act:

“Yesterday evening, the House of Representatives failed to pass the… Read More

March 13, 2018

TOPIC: Advocacy, Featured News

83 Patient and Provider Organizations Remain Opposed to Right to Try Legislation

Posted by Christina Jensen
Yesterday evening, NORD joined 82 patient and provider organizations in sending a letter to the House of Representatives stating our opposition to the newest version of the Right to Try Act that was released on Saturday and is scheduled for a vote today.
While this version contains considerable improvements to patient safety compared to prior versions, it will still create… Read More

March 7, 2018

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

Another Successful Rare Disease Day®

Posted by Christina Jensen

Thank you to our rare disease partners and every person who worked to heighten awareness on Rare Disease Day® in 2018.  On this day, everyone RDD-LOGO-18-stickycomes together globally to bring attention to all 7,000 rare diseases that combined affect 30 million Americans–or 1 in 10 of us–and millions more… Read More

March 5, 2018

TOPIC: Get Involved

35 Ways to Celebrate the 35th Anniversary of NORD

Posted by Jennifer Huron

This May, the National Organization for Rare Disorders (NORD) will turn 35.  This nonprofit organization is the leading advocate for patients with rare diseases.  There are 30 million Americans with rare diseases—one-tenth of the population—making it an issue that touches nearly every U.S. household in one way or another.  Here are 35 interesting ways to get involved to celebrate… Read More

March 2, 2018

TOPIC: Featured News, Patients & Members, Research, Uncategorized

Changing the Landscape of Rare Disease Research

Posted by Laura Mullen

*The following is a a guest blog posting by NORD’s Director of Research Programs, Vanessa Boulanger, originally published 2/28/18 on at`


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 understood. The National Organization for Rare Disorders (NORD), the… Read More