Rare Disease News

NORD Publishes Physician Guide to Mitochondrial Myopathies

Published June 28, 2016 by NORD

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As part of its ongoing series to promote physician awareness of rare diseases, the National Organization for Rare Disorders (NORD) has published a Physician Guide to Mitochondrial Myopathies, available free …

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NORD Applauds Senate for Authorizing Medical Foods Coverage for the Military in National Defense Authorization Act (S.2943)

Published June 16, 2016 by NORD

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NORD, the leading, independent advocacy organization committed to helping the 1 in 10 Americans with rare diseases, applauds the Senate for authorizing medical foods coverage in the National Defense Authorization …

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NORD Appoints Genetics and Metabolic Specialist Marshall L. Summar M.D. as Chairman of the Board

Published June 15, 2016 by NORD

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The National Organization for Rare Disorders (NORD), the leading, independent advocacy organization committed to helping the 1 in 10 Americans with rare diseases, has appointed Marshall L. Summar, M.D., as …

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NORD to Hold Rare Diseases Roundtable

Published May 12, 2016 by NORD

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The National Organization for Rare Disorders (NORD) will host a roundtable on May 17 with a wide range of stakeholders who are creating positive change across the rare disease community. …

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NORD Website Reaches 1 Million Monthly Visits

Published May 6, 2016 by NORD

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NORD, a nonprofit dedicated to helping people with rare diseases, reached a new milestone with 1 million visits to its website (www.rarediseases.org) in the past month. “As part of our …

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NORD and Trio Health to Provide Real-World Insights to Improve Access and Quality of Care for More Than 7,000 Rare Diseases

Published April 28, 2016 by NORD

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WASHINGTON, D.C./BOSTON ― April 28, 2016 ―The National Organization for Rare Disorders (NORD), the country’s leading voice for the rare disease patient community, is collaborating with Trio Health to leverage …

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NORD Announces 20 Rare Disease Patient Groups Selected to Develop Natural History Studies as Part of FDA Cooperative Agreement

Published April 19, 2016 by NORD

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Twenty rare disease patient groups have been chosen to develop natural history studies with the assistance of the National Organization for Rare Disorders (NORD) supported in part by a cooperative …

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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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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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