K-T Support Group (Klippel Trenaunay)

The Klippel-Trenaunay Support Group is a voluntary, self-help organization dedicated to providing support for individuals affected with Klippel-Trenaunay syndrome and their families. Klippel-Trenaunay syndrome is a rare congenital disorder characterized by the presence of a port-wine stain on the skin, excessive growth of the soft tissues and/or bones, venous malformations, and lymphatic abnormalities. Recent studies have connected K-T primarily to PIK3CA Related Overgrowth (PROS) disorders. Established in 1986, the organization conducts biannual meetings for affected individuals and their families to enable them to exchange information, experiences, and support; makes medical advisors available during these meetings; and provides phone support to members. The Klippel-Trenaunay Support Group provides a variety of educational materials including a periodic newsletter, brochures, and a list of current medical articles on K-T syndrome.