Rare Disease News

Running for Rare Named an Official Charity Partner of the 2016 TCS New York City Marathon Set for Sunday, November 6, 2016

Published March 15, 2016 by NORD

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Running for Rare was named an Official Charity Partner of the 2016 TCS New York City Marathon, it was announced today by the National Organization for Rare Disorders (NORD). The …

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Running for Rare Marathon Team Expands Under NORD

Published March 11, 2016 by NORD

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The Running for Rare marathon team will expand under new governance with the National Organization for Rare Disorders (NORD), the leading independent nonprofit representing all people with rare diseases and …

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Today is Rare Disease Day®

Published February 29, 2016 by NORD

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On this day, join the 30 million Americans who are making the voice of rare diseases heard. Your participation on Rare Disease Day means more awareness and hope for 1 in …

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Running on Air for Rare Disease Day

Published February 11, 2016 by NORD

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“I want to shake up what people think is possible,” says Mary Kitlowski – “ both people with rare diseases, and people without. If I can make a difference by …

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Rare Disease Day Video for 2016 Launched

Published February 4, 2016 by NORD

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Watch the global video for Rare Disease Day with your friends, family, and colleagues!

Join NORD and ABC News for a Rare Disease Day Tweetchat on March 1

Published January 21, 2016 by NORD

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Get Involved

Join us for a nationwide conversation about rare diseases on: Tuesday, March 1, 2016 1:00 – 2:00 p.m. EST In celebration of Rare Disease Day®, NORD will co-sponsor a tweetchat on the topic …

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Join the Running for Rare Team!

Published January 18, 2016 by NORD

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Patients, caregivers, and runners: sign up to get involved with the Running for Rare Team!

FDA Invites Patient Organizations to Organize Their Own Meetings on the PFDD Model

Published January 12, 2016 by NORD

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When the Patient-Focused Drug Development (PFDD) Initiative was first announced as part of the 2012 PDUFA reauthorization, many patient organizations expressed concern that the initiative’s public meetings would focus on …

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Register for the 2016 Rare Impact Awards

Published January 5, 2016 by NORD

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Join us in celebrating the rare disease community. Register for the 2016 Rare Impact Awards.

Get Involved in Your State on Rare Disease Day

Published December 17, 2015 by NORD

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On February 29, millions of people worldwide will come together to raise awareness about rare diseases and their impact on patients’ lives. This is our day to be heard, so speak up and tell your elected officials about what it is like to live rare.

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