NORD Rare Action Network℠ Releases Spring 2017 State Policy Legislative Tracker
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See what legislation we are tracking (and join us!) to help improve the lives of people and families with rare diseases.
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Published April 5, 2017 by NORD
See what legislation we are tracking (and join us!) to help improve the lives of people and families with rare diseases.
Read morePublished March 21, 2017 by NORD
Washington, D.C., March 21, 2017—The National Organization for Rare Disorders (NORD) and Friends of Cancer Research, two leading organizations that collectively represent millions of Americans with cancer and rare diseases, …
Read morePublished March 20, 2017 by NORD
Washington, D.C., March 20, 2017 – The National Organization for Rare Disorders (NORD) and 86 other organizations issued a letter today calling on Congress to take a hard look at …
Continue reading “NORD Joins 86 Organizations to Call on Congress to Protect Medicaid”
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 March 15, 2017 by NORD
2017 Honoree Rare Impact Award Brandon Hudgins For 20 years, Brandon Hudgins has chased his dreams of being an elite athlete and has put the demanding sport of competitive running …
Continue reading “Brandon Hudgins – 2017 Rare Impact Award Honoree”
Read morePublished March 15, 2017 by NORD
Washington, D.C., March 15, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement opposing the …
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