Who We Are

Welcome to the Proteus Syndrome Foundation (PSF). We are composed of families who connect with each other through the foundation and professionals who work tirelessly to help find effective treatments for Proteus. The PSF provides support through family conferences, family sharing through our (new) PSF Forum on our web page, and grants for families in need of assistance. Proteus syndrome can be an isolating syndrome, but as we come together under the PSF umbrella, we will never stand alone.  

Mission Statement

The Proteus Syndrome Foundation, a 501c3 not-for-profit organization, is dedicated improving the lives of Proteus patients by funding AKT1 research. We focus on providing family support in the form of education and networking individuals living with Proteus syndrome with other families and medical professionals.

We are a 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.