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X-Linked Alpha Thalassemia Family Support Network
a/k/a: XLATFSN
Address
1437 Cool Springs Drive
Mesquite, TX 75181
Phone
972-222-0050
Fax
--
800 Number
--
TDD
--
Email Address
ATR-X@raredisorders.com
Website
http://www.angelfire.com/biz2/atrx/
The X-linked Alpha Thalassemia Family Support Network is a national, self-help organization dedicated to providing information and support to individuals and families affected by X-linked alpha thalassemia mental retardation syndrome (ATR-X). This extremely rare disorder, that is fully expressed in males only, is characterized by alpha thalassemia, severe mental retardation, severe delays in the acquisition of skills requiring coordination of mental and muscular activities (psychomotor retardation), genital abnormalities, and characteristic facial abnormalities. The network engages in patient advocacy, promotes patient and general education and offers networking services.
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