Aims: To empower a large whānau (extended family) with a history of severe premature heart disease and familial hypercholesterolemia (FH).
Methods: After broad consultation a Hui was held to discuss how to better manage this issue to ensure present and future generations were appropriately screened and treated.
Results: A closed social media page with detailed information on how to manage and screen FH that includes a family tree (for those who consent) has been created. The whānau, facilitated by health professionals, have ownership of their health. This has led to an uptake of screening and treatment for FH with whānau who are now able to inform local health professionals about their disorder.
Conclusion: FH is the most common dominant genetic disorder in humans and causes premature heart disease and death. Current approaches are dependent on index patients presenting for cascade screening and do not incorporate the needs and views of the extended whānau. Establishing a partnership with the whānau and giving back control of health information is crucial to ensure equity. A national systematic programme is also needed to manage this condition with important health outcomes that can be averted if treated from a young age.