Rare Disease News

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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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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Maria Kefalas, Ph.D.: 2018 Rare Impact Award Honoree

Published April 25, 2018 by NORD

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In 2009, Sociology professor Maria Kefalas, Ph.D., and her husband welcomed their fourth child to the world. They named her Calliope Joy (Cal for short) to symbolize the overwhelming joy …

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Ellen V. Sigal, Ph.D.: 2018 Rare Impact Award Honoree

Published April 25, 2018 by NORD

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A passion for patient advocacy, which has become her life’s work, stems from great personal loss for Ellen Sigal, Ph.D. After exhausting all of her options including an experimental therapy, …

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Chris Ulmer: 2018 Rare Impact Award Honoree

Published April 25, 2018 by NORD

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“Every time I meet someone new, I am focused on going into the interaction with an open mind and accepting heart,” says Chris Ulmer, co-founder and front man behind …

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