Phelan McDermid Syndrome Foundation
P.O. Box 1016
To promote and conduct educational activities regarding the genetic disorder known as 22q13 Deletion Syndrome, including the reason(s) the disorder occurs and its physical effects upon the persons having the disorder. To conduct periodic conferences and publish literature intended to educate the families of persons affected worldwide by the disorder, to provide guidance in the care of the affected family members as research progresses
Every other year the Foundation sponsors a 3-4 day conference where families gather for educational and support related issues.