Rare Disease News

Dr. Frederick Kaplan, M.D. – 2017 Rare Impact Award Honoree

Published March 15, 2017 by NORD

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2017 Honoree Rare Impact Award Frederick Kaplan, M.D. Dr. Frederick Kaplan’s life changed the day he met a 2-year-old girl with fibrodysplasia ossificans progressiva (FOP), a debilitating and progressive rare …

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Brandon Hudgins – 2017 Rare Impact Award Honoree

Published March 15, 2017 by NORD

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2017 Honoree Rare Impact Award Brandon Hudgins For 20 years, Brandon Hudgins has chased his dreams of being an elite athlete and has put the demanding sport of competitive running …

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NORD Issues Statement Opposing the Preserving Employee Wellness Programs Act (H.R.1313)

Published March 15, 2017 by NORD

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Washington, D.C., March 15, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement opposing the …

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NORD Issues Statement as House Committees Review the American Health Care Act

Published March 8, 2017 by NORD

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Washington, D.C., March 8, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in advance …

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NORD Issues Statement on Release of the American Health Care Act

Published March 7, 2017 by NORD

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Washington, D.C., March 7, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response …

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Eleven Major Patient Groups Outline Joint Position on Health Care Reform

Published March 6, 2017 by NORD

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Washington, D.C., March 6, 2017 – A coalition of eleven nonpartisan patient groups today laid out a joint set of goals they want Congress to focus on as it considers …

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NORD Issues Statement on President Trump’s Address to Congress

Published March 1, 2017 by NORD

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NORD Issues Statement on President Trump’s Address to Congress Washington, D.C., March 1, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans …

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NORD Unveils “Do Your Share for Rare,” Year-long Campaign for Rare Disease Public Awareness

Published February 28, 2017 by NORD

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Danbury, Conn., February 28, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announced a year-long awareness campaign for …

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Rare Disease Summer Family Camp: A Place to Call Home

Published February 13, 2017 by NORD

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June 1-4 in Ashford, CT: Second-ever Rare Disease Summer Family Camp

Join NORD and ABC News for a Rare Disease Day® Tweetchat on Feb. 28

Published February 9, 2017 by NORD

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In celebration of Rare Disease Day®, NORD will co-host a tweetchat on the topic of rare diseases with Dr. Richard Besser, Chief of the ABC News Medical/Health Unit. The tweetchat will take place on Tuesday, Feb. 28, …

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