Williams Syndrome Foundation

The Williams Syndrome Foundation is a UK national charity supports individuals and families affected by Williams syndrome a rare genetic condition caused by microdeletion of approximately 26–28 genes on chromosome 7q11.23 (including the elastin gene), affecting around 1 in 20,000 births and causing characteristic facial features, cardiovascular anomalies, learning difficulties, and a uniquely sociable personality.

The foundation grew out of parents’ need for accurate information and mutual support when Williams syndrome was poorly understood. Its mission is to improve the lives of people with the condition by providing guidance, community, and evidence-based resources, while also promoting greater public and professional awareness.

The Foundation runs annual family weekends, regional support groups, and educational resources for schools and healthcare professionals. It collaborates with the Williams Syndrome Foundation International consortium and funds research into supravalvular aortic stenosis and cognitive development in Williams syndrome.