Rare Disease News

Life with CGD

Published November 5, 2015 by NORD

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Patient Stories

In April 2013, the Cooley family welcomed their second child, Sean Ryan. After some problems regarding his weight during the pregnancy, the Cooley’s were thrilled when their healthy baby boy …

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Living with Seizure Disorder

Published November 3, 2015 by NORD

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Patient Stories

In July of 1999, Andrew Ablondi was born to two loving and excited first-time parents. Although the pregnancy was uneventful, the delivery was long and Andrew arrived with a misshapen …

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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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They Said things like, “She’ll Grow Out of It”

Published October 28, 2015 by NORD

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Patient Stories

Abigail MacCurtain was born a happy and healthy baby girl in the winter of 2011, despite being born at 35 weeks due to Premature Rupture of Membranes (PROM). The only …

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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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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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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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From Mother to Daughter

Published October 1, 2015 by NORD

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Patient Stories

“Although this horrible rare disease has taken a lot of time away from normal life, my family and I are blessed for every breath, every smile, and every rainy day! …

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Giving Spotlight: Elizabeth and Chris Honor Son, Obie, with Donations to NORD, a Favorite Charity

Published September 30, 2015 by NORD

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Patient Stories

“We are happy to be able to support NORD, and both grateful and humbled that so many of our family and friends have donated in Obie’s name to help others.” …

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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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Rare Disease News

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