About Us

Mission: The Proteus Syndrome Foundation has been founded to support and educate familes and professionals, and to raise money for research to find a cure for individuals living with Proteus Syndrome.


Daniel Rinaldi About UsThe Proteus Syndrome Foundation is a 501 (c)3 not-for-profit organization founded in 1993 and governed by a voluntary Board of Directors, most of whom are parents of a child with Proteus Syndrome.

The 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 thoughout the year, a regular newsletter is distributed to families and medical professionals featuring latest developments, information, photos and stories from families.

Upcoming Events


Alexander Hoag
In Loving Memory of
Alexander Hoag
7/5/90 - 9/20/99
"He did a lot in 9 short years."

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