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| 22q13 Deletion Syndrome / Phelan-McDermid Syndrome is a rare genetic anomaly caused by the absence of genes at the tip of the long-arm of the 22nd chromosome. There is a wide range of severity of symptoms in people with the deletion, but most exhibit moderate to severe physical and intellectual developmental delays and lack the ability to communicate easily. Many have delayed speech, problems with eating, sleeping and emotional stability. |
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| Many of our more than 380 families worldwide belong to the 22q13 Deletion Foundation Support Group. It provides contact information for families, a quarterly newsletter, this Website, Yahoo message group forums for families and professionals, a parent-written booklet called “Raising a Child with 22q13 Deletion,” and organizes our biennial conference. |
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| If you have questions about our group, you can e-mail us at info@22q13.org. We will answer your questions, help you to get in contact with experts on 22q13 Deletion / Phelan-McDermid Syndrome, and start the registration process for Membership to our Support Group. Our Support Group includes families from across the United States and around the world. |
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| The Support Group meets every two years. The conference gives families a chance to forge friendships, exchange ideas and learn the latest medical news. This is one of the few chances many families have to see and interact with children affected by 22q13 Deletion / Phelan-McDermid Syndrome and their families. Our next conference is July of 2008. |
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The 22q13 Deletion Foundation organizes the biennial Support Group Conference. The Foundation was founded in 2002 and raises money for the biennial conference and other initiatives to benefit our children and their families.
We are a federally recognized 501(c)(3) non-profit organization. |
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