Rare Disease News

NORD Publishes Report on Post-Transplant Lymphoproliferative Disease

Published November 29, 2018 by NORD

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Washington, DC, November 29, 2018–As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on …

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Moving documentary on Joshua Frase Foundation, Nibs – the matriarch of the first ever MTM dog colony, and the power of patient advocacy

Published July 9, 2018 by NORD

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The Joshua Frase Foundation (JFF) is a non-profit organization founded with a simple yet seemingly unattainable vision: to find a cure for Myotubular Myopathy (MTM). The journey towards a cure …

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Changing the Landscape of Rare Disease Research

Published March 2, 2018 by NORD

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*The following is a a guest blog posting by NORD’s Director of Research Programs, Vanessa Boulanger, originally published 2/28/18 on PCORI.org at https://www.pcori.org/blog/changing-landscape-rare-disease-research?utm_source=general` A rare disease, by definition, affects …

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NORD and Neurology Reviews Publish Special Report

Published March 27, 2017 by NORD

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As part of its efforts to educate medical professionals about rare diseases, NORD, the leading independent nonprofit representing the 30 million Americans with rare diseases, is pleased to announce publication …

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President Obama Signs Advancing Hope Act

Published September 30, 2016 by NORD

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Washington, D.C., September 30, 2016 – Today, President Obama signed the Advancing Hope Act (S. 1878), extending the Rare Pediatric Disease Priority Review Voucher (PRV) program until December 31. “On …

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NORD in the News: Financial Times Highlights NORD’s Training and Advice for Family Foundations

Published June 28, 2016 by NORD

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A recent article in the Financial Times (June 24, 2016) looked at the growing impact families have on medical research. According to the Center of Strategic Philanthropy at the Milken …

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Dr. Arthur Caplan: 2016 Rare Impact Award Honoree

Published May 11, 2016 by NORD

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When he was six years old, Arthur Caplan came down with polio and was temporarily paralyzed. That episode – which included time at Boston’s Mass General Hospital followed by rehab …

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Dawn Laney: 2016 Rare Impact Award Honoree

Published May 11, 2016 by NORD

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A leading expert in her field, Dawn Laney, M.S., C.G.C., C.C.R.C. is a genetic counselor, instructor, and program leader at Emory University in the Department of Human Genetics. She manages …

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Debra Miller: 2016 Rare Impact Awards Honoree

Published May 11, 2016 by NORD

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Debra Miller co-founded CureDuchenne in 2003 with her husband, Paul, after their only son was diagnosed with Duchenne Muscular Dystrophy. With a background in sales and marketing, she leads CureDuchenne …

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Happy Mother’s Day from NORD!

Published May 8, 2016 by NORD

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Rare Moms are resilient; fighting the battle against rare diseases day in and day out. Whether they’re a mother dealing with a diagnosis themselves or a mother who is caring …

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