Familial Cardiomyopathy Program

Some heart conditions, including cardiomyopathy, are caused by genetic abnormalities passed down through families. When adults or children are diagnosed with these conditions, their family members should be evaluated by a cardiologist, too.

The Familial Cardiomyopathy Program is a special program for patients with cardiomyopathies. It unites the breadth of resources from two premier institutions, Children’s Hospital of Philadelphia (CHOP) and Penn Medicine. Our team members are among the best in the country in the treatment of cardiomyopathies. They work together to ensure your entire family receives the best care.

About familial cardiomyopathy

A cardiomyopathy is a disease where the heart muscles becomes enlarged or weakened, preventing it from working as well as it should. There are different types of cardiomyopathies. Two types that run in families are:

  • Dilated cardiomyopathy: The pumping chambers of the heart are abnormally large and weak.
  • Hypertrophic cardiomyopathy: The pumping chambers of the heart become abnormally thick.

A person may have one of these conditions for years without knowing it or having symptoms. If one person in a family is diagnosed, though, it is important that a cardiologist evaluates other family members to assess their risk.

In some cases the heart of a child or adult with a cardiomyopathy will become progressively weaker. This can lead to heart failure (difficulty breathing, difficulty eating, excessive sweating and poor growth). However, in some cases, cardiomyopathies can be treated with medications that help prolong health and improved quality of life.

What we do

The Familial Cardiomyopathy Program provides screening, evaluation and coordinated care from a multidisciplinary team of cardiomyopathy and heart failure experts that includes:

  • Pediatric and adult cardiologists
  • Nurses and nurse practitioners
  • Geneticists
  • Genetic counselors
  • Social workers

If you or your child is diagnosed with a cardiomyopathy, appropriate treatment will be initiated. Genetic counselors are also available to provide counseling for the whole family and genetic testing as needed.

Genetic services

Genetics specialists are available at both Penn and CHOP to provide a comprehensive genetic assessment. Genetic counselors can also help answer questions families often have, such as “Are my children or other family members at risk for cardiomyopathy?” or “How could genetic testing be helpful to me or my family members?” 

Children’s Cardiomyopathy Foundation (CCF) Accreditation

Children's Hospital of Philadelphia has been designated as a Children’s Cardiomyopathy Foundation (CCF) Accredited Center of Care. CCF’s Accredited Center of Care (ACC) program recognizes medical centers in the U.S. and Canada that provide high-quality cardiac care and specialized disease management to children with cardiomyopathy.

Next Steps