Mission: The Proteus Syndrome Foundation has been founded to support and educate families and professionals, and to raise money for research to find a cure for individuals living with Proteus Syndrome.
The Proteus Syndrome Foundation is a 501 (c)3 not-for-profit patient advocacy organization founded in 1992 and governed by a voluntary Board of Directors, most of whom are parents of a child with Proteus Syndrome.
Our main goals are patient and family support, public education, medical staff education, promotion and funding of research and ultimately the treatment and cure of Proteus Syndrome.
The Medical Advisory Board of the PSF consists of seven clinical and research medical professionals. This international group of men and women are noted experts on Proteus Syndrome throughout the world.
Fund raising takes place throughout the year, a regular newsletter is distributed to families and medical professionals featuring latest developments, information, photos and stories from families.