Patient Advocacy & Support

Having a child or family member with a heart defect or inherited condition can be frightening, and losing someone to sudden death is devastating. You are not alone. The following organizations offer advocacy and support for parents and families.

• Congenital heart defects:
  • Children’s Heart Foundation
• Familial hypercholesterolemia (FH):
  • FH Foundation
• Hypertrophic cardiomyopathy:
  • Hypertrophic Cardiomyopathy Association
• Inherited arrhythmia syndromes:
  • Sudden Arrhythmia Death Syndromes (SADS) Foundation, 1 (800) STOP-SAD or (801) 531-0937. Provides information, advocacy and support for families with inherited arrhythmia syndromes. SADS youth advisors who are in their late teens and early twenties share their stories on the site, and they are open to being contacted.
  • Parent Heart Watch
• Unexplained death of a child:
  • The Sudden Unexplained Death in Childhood Foundation