Rare Disease News

National Brain Tumor Society

Published November 23, 2015 by NORD

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Featured News

The National Brain Tumor Society Tumor is a non-profit organization whose mission is to inspire hope and provide leadership within the brain tumor community.

Cutis Laxa Internationale

Published November 16, 2015 by NORD

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Dedicated to breaking the isolation of patients and families affected by cutis laxa, a rare genetic disorder of the connective tissue.

CMTC-OVM

Published November 9, 2015 by NORD

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This week’s spotlight member is CMTC-OVM, an organization based in The Netherlands.

Giving Spotlight: Parents Thank NORD for Saving Daughter’s Life

Published November 9, 2015 by NORD

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Laurie and Chuck Eallonardo were thrilled at the birth of their twins, Jenna and Caden. Laurie felt happy and relieved that she had been able to carry them for 38 …

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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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Rare Disease News

Access State Report Card Data