Welcome
This site supports a community of nearly 100 families and medical professionals from around the world who seek a better understanding of this complex genetic condition. We share practical advice and follow each family’s story with interest. You may participate as much or as little as you choose, No question is too minor or tough because eveything matters. For many it has become a primary source of information for 9q34.3 deletion.
As you read through the information on this website, you will learn that children and adults with this condition can pose many medical, developmental, and behavioral challenges. Our 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.
