Rare Disease News

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.

Happy Father’s Day from NORD

Published June 17, 2016 by NORD

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The strength of the rare disease community is defined by the people in it, and rare dads are some of our strongest advocates. You are always there to try and …

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NORD Appoints Genetics and Metabolic Specialist Marshall L. Summar M.D. as Chairman of the Board

Published June 15, 2016 by NORD

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The National Organization for Rare Disorders (NORD), the leading, independent advocacy organization committed to helping the 1 in 10 Americans with rare diseases, has appointed Marshall L. Summar, M.D., as …

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NORD Members Share Great Resources for ER Visits During #RareERChat

Published May 27, 2016 by NORD

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Emergency room visits are a fact of life for many people with rare diseases. And, when the patient is a child, these experiences can be especially stressful for the entire …

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NORD Summit 2016

Published May 23, 2016 by NORD

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NORD’s Rare Diseases and Orphan Products Breakthrough Summit will be held in Arlington, VA October 17-18

Watch Live: Tomorrow’s Rare Impact Awards Ceremony

Published May 16, 2016 by NORD

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Rare Impact Awards Live Stream: Watch the Ceremony Online It is almost time for the Rare Impact Awards! Not able to attend in person? NORD has you covered: join us …

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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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NORD Website Reaches 1 Million Monthly Visits

Published May 6, 2016 by NORD

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NORD, a nonprofit dedicated to helping people with rare diseases, reached a new milestone with 1 million visits to its website (www.rarediseases.org) in the past month. “As part of our …

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Dr. Stephen Cederbaum: 2016 Rare Impact Award Honoree

Published May 5, 2016 by NORD

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A medical geneticist and expert on inborn errors of metabolism, Stephen Cederbaum, MD, has been affiliated for many years with the University of California, Los Angeles, as a professor, medical …

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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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