Rare Disease News

NORD Issues Statement Regarding House Passage of the Right to Try Act (S.204)

Published May 22, 2018 by NORD

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Washington, D.C., May 22, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement following …

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Save the Date for NORD’s 2018 Rare Summit

Published May 21, 2018 by NORD

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We are looking forward to bringing all stakeholders in rare diseases together once again for our annual Rare Diseases and Orphan Products Breakthrough Summit. We hope to see you there! …

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Watch LIVE: NORD’s 35th Anniversary & Rare Impact Awards Celebration

Published May 10, 2018 by NORD

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Join us on May 17 via Facebook Live!

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NORD 35th Anniversary Blog Series: The Early Years (1980s)

Published May 7, 2018 by NORD

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2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary. For the past 35 years, NORD has taken pride in being the rare …

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35 Ways and Growing: NORD’s Service to the Rare Disease Community

Published May 4, 2018 by NORD

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For 35 years, NORD has been leading the fight to improve the lives of patients and families with rare diseases. We do this by supporting patients and organizations, accelerating research, …

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Robert Campbell, Jr., M.D.: 2018 Lifetime Achievement Award Honoree

Published April 25, 2018 by NORD

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Dr. Robert M. Campbell, Jr. is Director of the Center for Thoracic Insufficiency Syndrome (CTIS) and an Attending Physician in the Division of Orthopaedic Surgery at Children’s Hospital of Philadelphia …

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Estelle Benson, Founder of GBS|CIDP Foundation International: Abbey S. Meyers Leadership Award Honoree

Published April 25, 2018 by NORD

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The GBS|CIDP Foundation International, one of the first member organizations of NORD, works towards a future when no one with Guillain-Barre syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), and related …

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Richard Pazdur, M.D.: 2018 Public Health Leadership Award Honoree

Published April 25, 2018 by NORD

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Richard Pazdur, M.D. is the Director of the Food and Drug Administration’s Oncology Center of Excellence (OCE), which leverages the combined skills of the FDA’s regulatory scientists and reviewers with …

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Patrick Dunegan: 2018 Rare Impact Award Honoree

Published April 25, 2018 by NORD

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Patrick Dunegan and his wife, Jennifer, met at church, spending time together serving their local community as Kentucky Colonels and through volunteer work with the Jewish Hospital of Louisville. Each …

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Elisabeth Dykens, Ph.D.: 2018 Rare Impact Award Honoree

Published April 25, 2018 by NORD

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Elisabeth Dykens, Ph.D., a clinical psychologist and researcher studying rare genetic syndromes, has long been a leader in the field of intellectual and developmental disabilities. Since she began her research …

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