Gould Syndrome Foundation exists to provide hope and help to children and adults with the Ultra Rare Disease, Gould Syndrome; affecting COL4A1 and COL4A2 genes.
We operate as a small group of committed volunteers, advocates, and researchers. We are funded fully by the generous support of loving family, friends and allies of those with this rare disease.
Gould Syndrome is a rare, genetic, multi-system disorder. Gould Syndrome is often characterized by abnormal blood vessels in the brain (cerebral vasculature defects), eye development defects (ocular dysgenesis), muscle disease (myopathy), and kidney abnormalities (renal pathology); however, many other aspects of the syndrome including abnormalities affecting the structure of the brain (cerebral cortical abnormalities) and lung (pulmonary) abnormalities continue to emerge and the full spectrum is still uncharacterized.
Meet the Board Members that make up our Non-Profit's Board of Directors and our Advisory Board and Staff. The Advisory Board connects us to the medical and research community working to help people afflicted with Gould Syndrome and families dealing with the impact on loved ones.