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Patient Stories

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

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DoYourShare cover photoDanbury, Conn., February 28, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans… Read More

Family Moves Across State Lines to Receive Better Access

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Gabby was born with the rare condition vanishing gastroschisis and lives with short bowel syndrome. Gabby was born with the rare condition vanishing… Read More

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Nominations Open for NORD’s 2017 Rare Impact Awards

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Washington, D.C., October 14, 2016—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today announced it is accepting nominations for the 2017 Rare… Read More

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A New Partnership that Helps Raise Awareness of Rare Diseases

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We’re thrilled to announce a new partnership that will help raise awareness of rare diseases and connect The Mighty‘s wide-reaching readership with NORD resources. As part of the partnership, NORD, the leading… Read More

A Group No One Applies to Join

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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

I belong to ECD…. Read More