Resources
Support for people living with HoFH and their families
We are in the process of developing a series of downloadable tools and resources to help people living with HoFH and their families.
The following materials are currently available, but be sure to check back in the future for more.
Patient Brochure
Help your patients and their caregivers learn about the causes, impact, and signs and symptoms of HoFH
Organizations working for a better future for those living with HoFH
There are a number of advocacy and research groups in Canada, the US and Europe with a mandate to help improve the lives of people living with HoFH.
Visit these websites for further information, resources, and support.
These organizations are an incomplete listing of rare disease advocacy groups. The list is meant for informational purposes only and is not intended to replace your healthcare professional’s medical advice. Ask your doctor or nurse any questions you may have about your disease or treatment plan.
FH Canada
FH Canada Registry
The goals of the FH registry are to improve care to patients with FH and to reduce cardiovascular disease in this population at high risk
Visit WebsiteFamily Heart Foundation
The mission of the Family Heart Foundation is to save generations of families from heart disease through timely identification and improved care of familial hypercholesterolemia and elevated lipoprotein(a).
Visit Website2023 EAS Consensus on HoFH
https://academic.oup.com/eurheartj/advance-article/doi/10.1093/eurheartj/ehad197/7148157?login=false
Visit WebsiteWorldwide experience of HoFH, retrospective cohort study published in The Lancet
https://eas-fhsc.org/publications/
Visit Website