Sharing experiences of HUWE1 gene variants
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.
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.
LOUIE'S HUWE - A NEW NON PROFIT
Louie is a little boy with a HUWE1-related genetic condition. Louie's parents recently 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 HUWE1.org is supporting this.
Alternatively just drop us an email at firstname.lastname@example.org.
Note these are personal communications, we will never add you to mailing lists or share your details.