Patient and Family Resources 

Having a child or family member with an inherited cardiovascular condition can be frightening. You are not alone. The more you learn, the more empowered you are to take charge of your child’s and family’s health. We recommend the following national and international organizations that offer advocacy and support for parents and families who have inherited heart and blood vessel disorders.

Cardiomyopathy:

• Children’s Cardiomyopathy Foundation.
• Hypertrophic Cardiomyopathy Association.
• DCM Foundation for dilated cardiomyopathy.
• Genetic Cardiomyopathy Awareness Consortium.

Congenital heart defects:

• Children’s Heart Foundation.

Familial hypercholesterolemia (FH) and elevated Lp(a):

• FH Foundation.
• National Lipid Association .

Marfan syndrome:

• The Marfan Foundation.

Inherited arrhythmia syndromes:

• SADS Foundation for sudden arrhythmia death syndromes - (800) STOP-SAD.
• Parent Heart Watch.

Unexplained death of a child:

• Sudden Unexplained Death in Childhood (SUDC) Foundation.