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 Family Heart 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


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

Join the HoFH Community