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About Us

ABN: 22379450116

Currently the Foundations main focus is on the 22q11.2 Deletion and Duplication Syndrome.


The Foundation is a registered charity with the ACNC.  We have Deductible Gift Recipient Status and all donations of $2 or more are tax deductible.

The Foundation is made up of a group that consists of individuals with 22q11.2 Deletion Syndrome, parents, grandparents, siblings and carers of individuals with 22q11.2 D
eletion Syndrome as well professionals and multidisciplinary staff and researchers. We also have a number of volunteers assisting us with information on the 22q Duplication.

The Foundation was founded by the late Dr Tony Lipson of the Children’s Hospital Westmead, NSW.  Dr Lipson helped parents establish the first support group in the world for individuals with the syndrome.  The foundation has been run for many years by countless volunteers who have given their time to help other families also walking this same path.

Our Vision:

To support all those affected by 22q.

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