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FAMILY STORIES

Personal experiences of HUWE1 variants from around the world

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Read our family stories below. Or if you would like to share your own HUWE1 family story, we would love to hear from you! Please contact us to get started.

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LUCAS'S STORY

PHEOBE'S STORY

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SAM'S STORY

OLIVER'S STORY

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LOUIE'S STORY

ZAVIER'S STORY

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ELIZABETH'S STORY

RIVER'S STORY

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BRANDON'S STORY

ELSIE'S STORY

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©2025 by HUWE1.org. Please note that HUWE1.org provides this information for the benefit of people affected by HUWE1 gene variants. HUWE1.org is not a medical provider or health care facility and can neither diagnose any disease or disorder nor endorse or recommend any specific medical treatments. Patients must rely on the personal and individual medical advice of their qualified health care professionals before seeking any information related to their particular diagnosis, cure or treatment of a condition or disorder.

HUWE1.org supports the US charitable nonprofit organization Louie's HUWE (EIN: 86-1930096).
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