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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.

Aarskog Syndrome Parents Support Group

a/k/a: ASPSG

Address

62 Robin Hill Lane
Levittown, PA 19055-1411

Phone

215-943-7131

Fax

--

800 Number

--

TDD

--

Email Address

shannonfaith49@msn.com

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.

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