Rare Disease News

The Guthy-Jackson Charitable Foundation

Published November 2, 2015 by NORD

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This week, the Guthy-Jackson Charitable Foundation is in the member spotlight!

Giving Spotlight: HomeServe USA Leadership and Employees Donate More Than $26,000 to NORD

Published October 29, 2015 by NORD

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“We are proud to support the efforts of important organizations like NORD, and to have an employee base so willing to give to the communities and charities that matter to …

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Taking on NYC and a Rare Disease: An Introduction

Published October 28, 2015 by NORD

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Sophia Hanson is a college student and has the rare disease, Lymphedema. She is writing for NORD about the balancing act of going to college, moving away from home, and …

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Neuroendocrine Tumor Research Foundation

Published October 26, 2015 by NORD

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The Caring for Carcinoid Foundation has changed its name to Neuroendocrine Tumor Research Foundation.

NORD Releases First-Ever State Progress Report for Rare Diseases

Published October 22, 2015 by NORD

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Announcing NORD’s State Progress Report, a Roadmap for State Improvement.

Liam Cruz’ Diagnostic Journey

Published October 14, 2015 by NORD

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On July 27, 2011 the Cruz family welcomed a gorgeous baby boy, Liam, to their lives. Weighing 7lbs and 19 inches long, he was born at Greenwich Hospital in Greenwich, …

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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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