Welcome


This site supports a growing community of families and medical professionals from around the world who seek a better understanding of this complex genetic condition. As you read through the information on this website, you will learn that children and adults with Kleefstra syndrome can pose many medical, developmental, and behavioral challenges.

Our member community includes families who are newly diagnosed but also families who have been searching for a diagnosis for their child or indeed themselves for a very long time. We share practical advice and follow each family’s story with interest. Members may participate as much or as little as they choose.  No question is too minor or tough because everything matters.

For many the Website and Member Forum have become a primary source of information for Kleefstra syndrome, formerly known as 9q34.3 deletion.

Additional information