Proteus Syndrome Foundation

The Proteus Syndrome Foundation is a national, voluntary, non-profit organization dedicated to providing information, assistance, and support to children with proteus syndrome and their families. Proteus syndrome is a rare, extremely variable disorder of unknown cause that may be characterized by partial enlargement of the hands and/or feet; overgrowth of one side of the face, body, and/or arms and legs (hemihypertrophy); and/or an abnormally large head (macrocephaly) or asymmetry of the skull. Established in 1992, the Proteus Syndrome Foundation is committed to providing networking opportunities for affected individuals and family members; compiling a family directory; and creating a database of affected families around the world to help physicians and families obtain as much information as possible before making choices concerning surgeries and therapies. The foundation also works closely with researchers to promote clinical studies into proteus syndrome; communicates ongoing research efforts to affected families; provides referrals; engages in-patient and professional education; and offers a variety of materials including brochures, pamphlets, and a regular newsletter.