Rare Disease News

Target Cancer Foundation

Published October 12, 2015 by NORD

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TargetCancer Foundation provides up to date and breaking information about treatment options beyond the standard of care for rare cancer patients.

Raise Your Voice: Rare Disease Day 2016 is Coming

Published October 12, 2015 by NORD

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Date: February 29, 2016 Global Theme: Patient Voice Global Slogan: Join us in making the voice of rare diseases heard By definition, each rare disease affects a small segment of …

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Narcolepsy Network

Published October 5, 2015 by NORD

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Member Spotlight: The Narcolepsy Network is a national voluntary organization that was formed to serve the needs of people with narcolepsy.

The Undiagnosed: Orphans of the Rare Disease Community

Published October 5, 2015 by NORD

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While the approximately 7,000 known rare diseases run the full spectrum of symptoms and experience, rare disease patients encounter many common obstacles. Rare patients face incredible difficulty finding safe and …

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Jill Zeigler’s Story: Life with aHUS

Published September 24, 2015 by NORD

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“I am married and have a 9-year-old daughter. They were my motivation to keep fighting and get well.” At age 28, sudden kidney failure changed Jill Zeigler’s life. After weeks …

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HLRCC Family Alliance

Published September 21, 2015 by NORD

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Member Spotlight: HLRCC Family Alliance

Rare Disease Day 2016 Theme and Slogan Announced!

Published September 16, 2015 by NORD

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Theme: Patient Voice Slogan: Join us in making the voice of rare diseases heard It’s here! As the official sponsor and host of Rare Disease Day in the U.S., NORD …

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Rare Disease Day 2016 Theme and Slogan Announced

Published September 16, 2015 by NORD

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Theme: Patient Voice Slogan: Join us in making the voice of rare diseases heard As the official sponsor and host of Rare Disease Day in the U.S., NORD is excited …

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NORD Named Charity of the Week By The Week Magazine

Published September 15, 2015 by NORD

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This past week, the National Organization for Rare Disorders (NORD) was named “charity of the week” by The Week magazine. Each charity featured in The Week has earned a four-star …

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The LAM Foundation

Published September 14, 2015 by NORD

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Member Spotlight: This organization works to support women with Lymphangioleiomyomatosis (LAM).

Rare Disease News

Access State Report Card Data