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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Proteus Syndrome Foundation


4915 Dry Stone Drive
Colorado Springs, CO 80923





800 Number




Email Address




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.

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