Published July 7, 2017 by NORD
Washington, D.C., July 7, 2017—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 Bosma …
Read morePublished June 13, 2017 by NORD
Washington, D.C., June 13, 2017—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 CARD9 …
Continue reading “NORD Publishes New Rare Disease Report on CARD9 Deficiency”
Read morePublished May 30, 2017 by NORD
Washington, D.C., May 30, 2017—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 …
Continue reading “NORD Publishes Report on Hereditary Sensory Autonomic Neuropathy Type 1E”
Read morePublished March 15, 2017 by NORD
Rare Impact Award Cynthia Tifft, M.D., Ph.D. Dr. Cynthia Tifft is working to solve some of the nation’s toughest medical mysteries. As the Director of the Pediatric Undiagnosed Diseases Program at …
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Read morePublished March 15, 2017 by NORD
2017 Honoree Rare Impact Awards Beth Nguyen, R.N. Mother, wife, nurse, patient, advocate, and leader; Beth Nguyen wears multiple hats, and not one loosely. In 2007, before she began to …
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Read morePublished March 15, 2017 by NORD
2017 Honoree Rare Impact Awards Matthew Might, Ph.D. Ten years ago, Dr. Matthew Might was working in computer science and knew very little about the world of rare diseases. Today, …
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Read morePublished March 15, 2017 by NORD
2017 Honoree Rare Impact Award Ellie McGinn At only 9 years old, Ellie McGinn is driving research for a rare and fatal disease, has educated nearly 1,000 future doctors, …
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Read morePublished March 15, 2017 by NORD
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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Read morePublished January 11, 2017 by NORD
Washington, D.C., January 11, 2017—Data released by the U.S. Food and Drug Administration (FDA) show that 9 of the 22 new medications approved in 2016, or 41 percent, are orphan drugs to …
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Read morePublished October 26, 2016 by NORD
Washington, D.C., October 26, 2016—As part of its ongoing series to promote physician awareness of rare diseases, the National Organization for Rare Disorders has published The NORD Physician Guide to …
Continue reading “NORD Publishes Physician Guide to Cutaneous T-Cell Lymphoma”
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