Heart Defect Resources

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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.

 

Support Groups Online:

Children with Congenital Heart Defects CLICK HERE

Heart Moms CLICK HERE

 

Resources:

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

Organizations:

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

 

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