Published October 26, 2017 by NORD
View the full documentary. Danbury, C.T., October 26, 2017 – Imagine never being allowed to feel the sun on your skin. For 11-year-old Peyton, who is allergic to sunlight, that is …
Continue reading “NORD Releases New Documentary called “Good Morning Peyton””
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 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 …
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Read morePublished March 15, 2017 by NORD
2017 Honoree Rare Impact Award Christine Grube After being diagnosed with Giant Axonal Neuropathy (GAN), a rare genetic disorder, Christine (Chrissy) Grube volunteered to be the first patient injected with …
Continue reading “Christine Grube – 2017 Rare Impact Award Honoree (Awarded Posthumously)”
Read morePublished March 15, 2017 by NORD
2017 Honoree Rare Impact Award Robert J. Desnick, M.D., Ph.D. “It’s very satisfying when your research efforts lead to new diagnostics or treatment for patients suffering from rare diseases.” This …
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Read morePublished February 28, 2017 by NORD
Danbury, Conn., February 28, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, announced a year-long awareness campaign for …
Read morePublished December 22, 2016 by NORD
Today we are sharing the story of one little girl who, by the age of three-months old, had faced surgery, an investigational treatment, and a near-fatal infection. When Gabby was born …
Continue reading “Family Moves Across State Lines to Receive Better Access”
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