Published 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 …
Continue reading “Cynthia Tifft, M.D., Ph.D – 2017 Rare Impact Award Honoree”
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 …
Continue reading “Beth Nguyen, R.N. – 2017 Rare Impact Award Honoree”
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, …
Continue reading “Matthew Might, Ph.D. – 2017 Rare Impact Award Honoree”
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, …
Continue reading “Ellie McGinn – 2017 Rare Impact Award Honoree”
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 …
Continue reading “Dr. Frederick Kaplan, M.D. – 2017 Rare Impact Award Honoree”
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 …
Continue reading “Orphan Drugs Represent 41 Percent of All New Medications”
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”
Read morePublished August 18, 2016 by NORD
Researchers have the opportunity to present research to a large and diverse audience during the 2016 #NORDSummit
Read morePublished June 28, 2016 by NORD
As part of its ongoing series to promote physician awareness of rare diseases, the National Organization for Rare Disorders (NORD) has published a Physician Guide to Mitochondrial Myopathies, available free …
Continue reading “NORD Publishes Physician Guide to Mitochondrial Myopathies”
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