Rare Disease News

Introducing the 2016 Rare Disease Day® Highlights Video

Published April 7, 2016 by NORD

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Thank you to our rare disease partners and every person who worked to heighten awareness on Rare Disease Day®. This is the one day that everyone comes together globally to …

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NORD Announces 2016 Rare Impact Award Recipients to be Honored on May 17

Published March 17, 2016 by NORD

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Continuing its annual tradition of recognizing the people, organizations, advocates and companies who are making a difference in the fight against rare diseases, the National Organization for Rare Disorders (NORD)® …

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NORD Founder Publishes Memoir Detailing Her Tireless Work as Parent-Advocate

Published March 2, 2016 by NORD

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“One day, I wish everyone dealing with a rare condition will have access to a treatment. I really hope you will enjoy reading these memories… and learn more about this …

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Neurology Reviews Publishes The Rare Neurological Diseaes Special Report

Published March 1, 2016 by NORD

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The Rare Neurological Disease Special Report™ was published on Rare Disease Day® in collaboration with the National Organization for Rare Disorders (NORD) as a supplement to the February 2016 issue …

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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 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.