Rare Disease News

Dr. Robert J. Desnick, MD, Ph.D – 2017 Rare Impact Award Honoree

Published March 15, 2017 by NORD

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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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NORD Unveils “Do Your Share for Rare,” Year-long Campaign for Rare Disease Public Awareness

Published February 28, 2017 by NORD

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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 …

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Family Moves Across State Lines to Receive Better Access

Published December 22, 2016 by NORD

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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 …

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Nominations Open for NORD’s 2017 Rare Impact Awards

Published October 14, 2016 by NORD

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Registration is open for the 2017 Rare Impact Awards.

A New Partnership that Helps Raise Awareness of Rare Diseases

Published September 30, 2016 by NORD

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NORD Now has A Growing Home Page on The Mighty and Will Appear on Many Stories on the Site.

A Group No One Applies to Join

Published September 14, 2016 by NORD

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By Elizabeth Silva Anderson, ECD Global Alliance, a NORD Member Organization An interview with Erdheim-Chester Disease patient, Janet Bunge, in honor of Erdheim Chester Disease Awareness Week (#ECDAwareness), Sept. 12-17, 2016 …

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Celebrating Awareness: One-Year Anniversary of Rare Disease of the Day

Published September 12, 2016 by NORD

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This summer marked our one-year anniversary of hosting the Rare Disease of the Day campaign on our Facebook page and website. It has been a productive campaign, sharing information on …

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Becoming a Marathon Runner

Published September 9, 2016 by NORD

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Written By: Kate Bartlett “I came across NORD’s website when I was doing research for my friend Heather Von St. James who was diagnosed with mesothelioma, 3 1/2 months after giving …

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Desiree Lyon Howe: 2016 Rare Impact Award Honoree

Published May 11, 2016 by NORD

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Desiree Lyon Howe lived for 10 years in excruciating pain before being diagnosed with Acute Intermittent Porphyria (AIP). She was finally diagnosed at the National Institutes of Health where what …

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Noah Victoria: 2016 Rare Impact Award Honoree

Published May 5, 2016 by NORD

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Noah Maria Victoria wrote her first poem at the age of 13 or 14 as a homework assignment. She composed “The Window,” a metaphor for her journey and countless trips …

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Rare Disease News

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