We are a registered 501(c)3 Nonprofit dedicated to providing hope and help to children and adults with Gould Syndrome; affecting COL4A1 and COL4A2 genes.
Gould Syndrome is an ultra rare genetic, multi-system disorder.
We connect and coordinate our families with researchers and medical professionals to get our disease and management coordination into the medical realm.
Education
COL4A1/COL4A2 gene mutations description, symptoms and the sub-diagnosis.
Advocacy
Teaching families how to advocate for their loved ones and access medical information.
Connecting
Doctors and researchers to bring research and medical therapeutic options to those affected.
We are a registered 501(c)3 Nonprofit dedicated to providing hope and help to children and adults with Gould Syndrome; affecting COL4A1 and COL4A2 genes.