Robinow Syndrome Foundation

The Robinow Syndrome Foundation is a non-profit; self help organization dedicated to providing information and support to individuals and family members affected by Robinow syndrome. Robinow syndrome is an extremely rare inherited disorder characterized by mild to moderate short stature (dwarfism) due to growth delays after birth; distinctive abnormalities of the head and facial (craniofacial) area; additional skeletal malformations; and/or genital abnormalities. The disorder may be inherited as an autosomal dominant or recessive genetic trait. Established in 1996, the foundation engages in-patient and professional education, provides referrals, has bi-annual conventions for members, and maintains a database. The foundation is also committed to collecting data from original case studies and including new and recent information. The Robinow Syndrome Foundation offers include a variety of educational materials including brochures, pamphlets, reports, some audiovisuals, personal and online support and a regular newsletter.