Louie's HUWE

In 2021, a group of parents of children with HUWE1-related genetic conditions established a 501c3 nonprofit charitable organization in the United States - Louie's Huwe (EIN: 86-1930096). People with HUWE1-related conditions can face a whole range of issues including intellectual disability, epilepsy, autism and a range of medical problems. However, since the condition is so rare, little is understood about it and how best to treat the symptoms. Louie's HUWE was founded to raise awareness and drive research into HUWE1-related conditions and their treatments. We now have a fantastic team including medical and genetic experts from John's Hopkins and Seattle Children's Hospital and research has been initiated to improve understanding of the impact of changes in the HUWE1 gene and to identify treatments, particularly for the severe epilepsy suffered by some individuals with HUWE1. To learn more please visit www.huwe1.org/louieshuwe

网站

www.huwe1.org

Louie's HUWE的外部链接

所属行业

非盈利组织

规模

2-10 人

总部

Stafford，Virginia

类型

非营利机构

创立

2021