Children from the HoFH Community

The HoFH Community is a network of people living with Homozygous Familial Hypercholesterolemia (HoFH) and parents of children with HoFH, connected by shared experience, and a resource for information specific to HoFH.

HoFH is the rare and more severe form of FH. Individuals with HoFH usually have LDL-Cholesterol levels over 400 mg/dL (often much higher) and a family history of early heart disease on both sides of the family. HoFH can cause very early heart disease, sometimes even in childhood. Thankfully, there are effective treatments available to reduce the risk for early heart disease.

The FH Foundation offers education and support for individuals and families living with HoFH, including:

  • Peer Support – connect with other people living with HoFH
  • Information about available treatments and clinical trials
  • Help finding and HoFH specialist
  • HoFH Community Meetings – virtual and in-person

Confirmatory Genetic Testing Offer

One important resource the FH Foundation is offering is no-cost genetic counseling and testing for individuals who meet criteria for HoFH or suspected HoFH and choose to have genetic testing to better understand their diagnosis. Family variant testing – testing family members for the same genetic mutation - is also available at no cost for 90 days after you receive your results. More information and the code you need to access this offer is available once you have signed up for the HoFH Community.

If you would like to speak with someone from the FH Foundation or have any questions, please call (844) 434-6334 or email