About Us

The Phelan-McDermid Syndrome Foundation is a non-profit group that offers support for families who are affected by 22q13 Deletion Syndrome/Phelan-McDermid Syndrome. The syndrome, which affects families worldwide, is a rare genetic occurrence and is the result of a damaged or missing protein on the 22nd chromosome.   The Phelan-McDermid Syndrome Foundation, established in 2002, is a 501(c)3 nonprofit group that provides support services for those who have family members affected by 22q13 Deletion Syndrome / Phelan-McDermid Syndrome. It also raises money to further awareness of the syndrome through research and sponsoring an international conference every two years. The Foundation facilitates connections between families through networking, communications and support services. We also build alliances with other rare diseases groups to expand our reach and exposure.   Our Support Group fosters family interaction through our Web site, quarterly 22q13 Deletion UPDATE newslettter, Facebook, Twitter and membership efforts. Our Foundation works with researchers who are looking into the cause and possible cure for the syndrome. It also sponsors an international conference every two years that brings together families, researchers and therapists.   The Phelan-McDermid Syndrome Foundation is run by a Board of Directors made up of volunteer parents. All of our decision-making roles are filled by volunteers. In 2009 we established our first office, in Venice, Fla., and hired our first part-time employee. We anticipate that as the number of those affected by 22q13 Deletion Syndrome / Phelan-McDermid Syndrome increases we will need to grow our Foundation and staffing as well.   Our mission is to bring together everyone affected by 22q13 Deletion Syndrome/Phelan-McDermid Syndrome to help them through the challenges they face every day and to raise awareness in the medical and research communities.

Last Updated on Sunday, 14 March 2010 14:34

Creation date : 13/11/2012 · 12:23
Last update : 15/09/2014 · 09:10
Category : To inquire
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