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CGD News

August 30, 2021
Living with CGD

CGD Advocate Moderator At Rare of Rare Summit

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Five years ago, specialists at Duke University Hospital provided Sebastian Sancho, diagnosed with chronic granulomatous disease as an infant, with a new immune system through a stem cell transplant. Today, Sebastian is a healthy nine-year-old who enjoys riding his bike, skateboarding – and, of course, playing with friends. Sebastian also

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July 26, 2021
Living with CGD

Book Chronicles Struggle With CGD Diagnosis

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When 4-year-old Sebastian Sancho received donor stem cells that provided him with a new immune system, a wave of gratitude washed over his father, Miguel Sancho. Years of struggle fighting chronic granulomatous disease, CGD, came down to one relatively simple step in a complicated medical procedure to end the disease. “The moment we were in the

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July 13, 2021
Living with CGD

Free Wellness Kits Available

POSTED BY: mtewey

Are you living with Chronic Granulomatous Disease (CGD)? Our friends at ANGEL AID are offering a limited amount of FREE Trauma-less Needle Pokes Wellness Kits to the CGD, Cystinosis, and Urea Cycle Disorder (UCD) communities. Each Wellness Kit includes: Trauma-less Needle Pokes Seven Steps Checklist Buzzy® Bumble Bee XL pain-blocker device

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June 28, 2021
Living with CGD

'Be Your Own Advocate'

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As an 18-year-old, Paul Boorack developed a high fever and had trouble breathing. He immediately visited his pediatrician who took a chest X-ray and sent him straight to the hospital. Paul had pneumonia – and stayed in intensive care for seven days. After that first time, Paul, who has chronic granulomatous disease, knew the symptoms of pneumonia

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May 21, 2021
Living with CGD

PI Conference Offers CGD-specific Sessions

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Would you like to learn more about your diagnosis? Explore facets of treatment? Connect with others who have CGD? And be part of the largest gathering of PI patients in the world? Then it’s time to register for the 2021 Primary Immunodeficiency Conference, which takes place online from June 23-26.   This free conference brings together the

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