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HUWE1 COMMUNITY

Raising awareness and sharing experiences of HUWE1-related genetic conditions around the world

HUWE1 DATA COLLECTION PROGRAM

The HUWE1 data collection program for individuals and families with HUWE1-related genetic conditions is live and taking participants. We have also seen our first data read-out with the most frequently reported symptoms.

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WHAT IS HUWE1?

HUWE1 is a gene located on the X chromosome. Variants or mutations on this gene are associated with a range of features and health issues.

As there are only very few people affected by HUWE1 variants worldwide, understanding of the impact of changes in this gene is still developing.

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LOUIE'S HUWE - THE NONPROFIT FOR HUWE1

Louie is a little boy with a HUWE1-related genetic condition. Louie's parents, along with other families have established a 501c3 charitable nonprofit organization in the US - Louie's Huwe (EIN: 86-1930096). With a fantastic team including medical and genetic experts, Louie's Huwe aims to raise funds for medical research into HUWE1-related genetic conditions and support HUWE1 families worldwide.

FAMILY STORIES

Read a collection of personal experiences of HUWE1 gene variants.

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LOUIE'S HUWE1 IN A MILLION GALA

Louie’s Huwe - the 501c3 nonprofit dedicated to HUWE1-related genetic conditions - held a fundraising Gala on 20 January 2024 at Potomac Point Winery, Virginia, USA. Over $100,000 was raised to fund research into HUWE1.

LATEST RESEARCH

See key research publications into the effects of HUWE1 gene variants.

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WHO WE ARE

HUWE1.org has been created by the parents of a little boy with a HUWE1 gene variant. Our son was diagnosed in 2015 and we found there was very little information available to families. We have put together this site as a starting point for basic information about HUWE1 and to share experiences.

HUWE1.org is in contact with HUWE1 families around the world. We are based in the UK and we support the US 501c3 charitable non-profit Louie's Huwe.

This site will not provide medical or therapeutic guidance and the stories provided here are purely for information.

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CONTACT US

We would love to hear from you! Get in touch below or see our Facebook page and join our active private Facebook group for families and individuals affected by HUWE1 gene variants.

Alternatively just drop us an email at huwe1gene@gmail.com.

Note these are personal communications, we will never add you to mailing lists or share your details without your permission.

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