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Resources

The International 22q11.2 Foundation, Inc.

The International 22q11.2 Foundation, Inc. - resources for families and health professionals about 22q deletion syndrome

Perhaps you've found your way to our website because you or a loved one was recently diagnosed with the 22q11.2 deletion. Maybe you're a physician, therapist, or educator looking for information about a new patient or student. However you came to find us, you've come to the right place. Our growing Foundation is committed to improving the lives of people with the 22q11.2 deletion syndrome and their families; with your help, we can realize our goals of detection, care, and cure.

National Center for Biotechnology Information (NCBI) Bookshelf - 22q11.2 Deletion Syndrome
Educating Children with Velo-cardio-facial Syndrome
The 22q Family Foundation

The 22q Family Foundation is dedicated to raising awareness for 22q11.2 deletion syndrome while connecting, supporting and offering accurate information to families affected by the disorder.

Prior to the creation of our organization, we, like many of you, received support, guidance and a sense of togetherness from Dempster Family Foundation [no longer in operation]. Their ideals of creating a community of those with shared experiences and raising awareness to better the lives of everyone affected by the disorder are something that we intend to continue as we grow. We are going to maintain and build upon many of the programs that many of us within the 22q community have come to rely on such as the 22q Education Station, the 22q Mystery Tour, and more. Our bridge to the future is that we intend to create new ways to connect members of our community, as well as work to make sure 22q11.2 Deletion Syndrome becomes a household name. It was important to us to keep the word "Family" in the name of the organization because we hope to become a part of yours'. This is your organization. Therefore, we welcome feedback, input and ideas so that we can be the most effective for the 22q Family. We appreciate the opportunity to serve you all and to help take the mystery out of 22q!

Educational Issues for Children with Chromosome 22q11.2 deletion

This educational slide presentation was prepared for families by Cheryl Dultz, San Juan Unified School District, CA. It includes an overview of current research at the time, strategies for learning in the classroom, and how to help your child at home. 

Knowledge is Hope.

The 22 Crew

The 22 Crew is a website from the UK developed by families of children with 22q. Their motto is "22Q CAN-DO".

Their mission is to fund research and provide social, educational and medical support for all those affected by 22q Deletion Syndrome.

Supporting children with genetic syndromes in the classroom: the example of 22q deletion

Supporting children with genetic syndromes in the classroom: the example of 22q deletion,

by Colin Reilly and Lindsey Stedman, the British Journal of Learning Support

Practical guidelines for managing adults with 22q11.2 deletion syndrome

This article was published online in 2014, in Genetics in Medicine, the official publication of the American College of Medical Genetics.