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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:

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  • for dilated cardiomyopathy.
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Congenital heart defects:

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

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Marfan syndrome:

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Inherited arrhythmia syndromes:

  • for sudden arrhythmia death syndromes - (800) STOP-SAD.
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Unexplained death of a child:

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