Heart Defect Resources

You are here

Congenital Heart Defects are the most common birth defect affecting 1 in 100 births. 22q11.2 Deletion Syndrome is found within 1 in 68 of those born with a heart defect. 75% of our population does have a heart defect of some kind. Here are some helpful resources for families with children who are affected with a heart defect.

These recommendations come from our community at large and from families of children in hopes this process can be easier for you with the right resources and supplies on hand. If you know of a resource that's not on our list that you would like to see added, please email: Lindsey@22qfamilyfoundation.org.

Informational Webinars:

What Parents Should Know about 22q and Potential Heart Defects CLICK HERE TO VIEW


Support Groups Online:

Children with Congenital Heart Defects CLICK HERE




Helpful Websites:

CHD Care Compass: A website devoted to helping you navigate the journey of having a child with a congenital heart defect from diagnosis through adulthood.  CLICK HERE


Mended Hearts: An organization dedicated to supporting heart patients and families throughout their life by providing peer-to-peer support, advocacy, and resources CLICK HERE

Conquering CHD: An organization focused on education, support, research, and advocacy. CLICK HERE

Adult Congenital Heart Association: CLICK HERE

The Organization for Understanding Congenital Hearts CLICK HERE

American Heart Association: CLICK HERE

Children's Heart Foundation: CLICK HERE


Latest News

Upcoming Event

Spread the Word