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Welcome to the Official Web Site of Phelan-McDermid Syndrome and 22q13 Deletion Foundation.

We are a growing, worldwide network of loving, caring parents and caregivers who are dedicated to making sure our children achieve the most that they can, and then some.

If you are a family with a child who has been recently diagnosed with Phelan-McDermid Syndrome, the 22q13 Deletion Foundation would like to welcome you. We are here to help.

On this site you will find a trove of helpful information on a range of topics affecting your child.

You will also find a great support network to help you to navigate to what lies ahead.
Order 22q13 Deletion Foundation Brochures:

Contact: Veronica Frunzi
Latest 22q13 Support group NEWS -
PHELAN-MCDERMID SUPPORT GROUP MARKED ITS 10TH ANNIVERSARY!
By Nick Assendelft
Vice-president, 22q13 Deletion Foundation

The Phelan-McDermid Support Group marked its 10th anniversary at its conference July 24-27 in Greenville, S.C. This was the sixth time the group met since its founding in 1998, which was the first formal gathering of families who have children affected by 22q13 Deletion Syndrome. The conference also capped off Phelan-McDermid Syndrome Awareness Week, which was proclaimed in nine states and Canada.

More than 100 families -- totaling more than 450 people -- attended this year’s Support Group meeting at the Embassy Suites. Ten years ago, our group started out at the same hotel with 20 out of the 25 families that were diagnosed at the time getting to know each other. A number of those original families attended this year’s conference.
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GET OUR NEW T-SHIRTS & CAR MAGNET
Just like the ones sold at the conference!
The red T-shirt plays off of the acronym "PMS" in hopes of peaking curiosity among the uninformed public who see families or friends wearing the shirts. On the front is the curiosity grabber "PMS - it's not what you think" and on the back is "Phelan-McDermid Syndrome" with our Support Group's Web site address!

There has been great interest in buying our magnetic car ribbons. Ours are green and white and say "10 Years of Support, Phelan-McDermid Syndrome," and display our new logo. They also will make great holiday gifts if you want to do some of your shopping early! The ribbons are $5 a piece (that includes shipping and handling), with all the proceeds going to the 22q13 Deletion Foundation.
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FOR THOSE WHO LIKE TO KEEP IT SIMPLE
Order our Classic Support Group Tote Bags & T-Shirts!
Our high-quality logo shirts and roomy tote bags make wonderful gifts, increase awareness of Phelan-McDermid Syndrome and raise money for our Foundation.

These are a wonderful way to spread the word about Phelan-McDermid Syndrome and the 22q13 Deletion Foundation. They even have our Web site address on them!