AARSKOG SYNDROME ORGANIZATIONS

Aarskog Syndrome Parents Support Group

215-943-7131

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62 Robin Hill Lane
Levittown, PA 19055-1411

The Aarskog Syndrome Parents Support Group (ASPSG) is a non-profit, self-help organization dedicated to providing information and support to parents of children with Aarskog syndrome. This is a rare genetic disorder characterized by distinctive facial abnormalities, unusually small hands, genital abnormalities, short stature, mild mental retardation, speech and language delays, and orthopedic problems. Established in 1993, the Aarskog Syndrome Parents Support Group offers phone and letter support; enables parents to exchange information, support, and resources through its parent-to-parent matching program; engages in patient advocacy; and supports and promotes ongoing medical research. The Aarskog Syndrome Parents Support Group also offers a variety of educational and support materials, including fact sheets, article reprints, case study information, and a regular newsletter.