Support for Your 22q Journey
A 22q diagnosis doesn’t define an individual, but it does come with many questions, worries, and unknowns. If you are newly diagnosed, or now looking for resources, support or others to connect with, we are here to help. First and foremost, welcome to the 22q Family! The 22q Family Foundation is an organization dedicated to supporting you no matter your age and connecting you with those that are on a similar path. We offer a variety of resources and programs that are tailored to the various stages of this journey.
22q11.2 deletion syndrome is a chromosomal abnormality that can cause a wide range of health and developmental issues, including: heart defects, breathing issues, problems with gastrointestinal, immune and endocrine systems, differences in the palate, slow growth, autism/developmental delays or learning disabilities. Children with this condition may have many or only a few of the symptoms, each with varying severity.
Ideally, children and adults with 22q11.2 deletion syndrome receive coordinated care from healthcare providers or in clinics with multidisciplinary teams of clinicians that are experienced working with similar patients. These clinics address each child’s individual health problems, as well as issues like speech or learning delays. Physicians with expertise in this condition can quickly recognize the diagnosis in some patients and take steps to improve their quality of life.
No matter what stage of the 22q journey you are in, we are here to support you. Whether you need educational resources, career coaching, financial assistance with higher education, or information around adult transition, we have programs to help.
When you, your child, or a loved one is diagnosed with 22q, your world completely changes. But with that diagnosis comes an invitation to join an ever-growing community of families and individuals like you! Making connections with others on a similar path is invaluable. We provide a number of resources to help you connect with others in our community.