The Foundation
Our History and Mission
Working together pays off!
The LEEFH Foundation is the National Center of Expertise for Genetic Testing of Familial Cardiovascular Diseases (LEEFH). Since 2014, LEEFH has coordinated DNA testing and family studies for FH nationwide. Until the end of 2013, there was a population-based screening program for FH, conducted by the StOEH (Foundation for the Detection of Hereditary Hypercholesterolemia). Thanks to this screening, nearly 30,000 (of the 60,000) patients with FH were identified over a 20-year period. The StOEH has transferred its accumulated knowledge and experience to LEEFH.
- Our goal: to prevent cardiovascular disease in family members with FH.
- Our mission: LEEFH connects and supports the national FH network in conducting family studies and raising awareness about FH.
- Activities:
- coordination of family-based research in collaboration with families, healthcare providers, and the Amsterdam UMC laboratory;
- ensure nationwide coordination, collaboration among LEEFH centers, and management of the database containing FH family trees;
- raise awareness about the importance of early detection and treatment;
- promote scientific research.
As LEEFH, we do not provide individual treatment recommendations.
Results and Funding
Family history research is easily accessible in the Netherlands
Thanks to healthcare providers and patients who undergo genetic testing when FH is suspected, approximately 300 new families with FH are identified in the Netherlands each year. Once FH is identified in a family, genetic testing for other family members begins.
Family members can easily undergo genetic testing if a specific FH genetic variant is known. This targeted DNA test is free of charge for family members (only the cost of the blood draw applies). This is because of the importance of early detection and preventing cardiovascular disease.
Health Insurers Netherlands allocates an annual budget to LEEFH for conducting tracing activities, specifically family research. This budget covers the office expenses and staff costs of the LEEFH Foundation. The Dutch Heart Foundation makes an annual contribution available for additional tracing activities, which enables LEEFH to hire additional staff. From the founding of the LEEFH Foundation through 2024, 87% of total revenue came from Zorgverzekeraars Nederland and the Dutch Heart Foundation.
For other activities, such as campaigns and projects, we do not have the means to fund them through our regular budget. We consider these activities to be very important in light of our mission: “Preventing cardiovascular disease in family members with FH.” To cover these costs, we reach out to donors and sponsors—always at the initiative of LEEFH itself. We are completely independent in our messaging. We operate on a multi-sponsorship basis, so contributions always come from multiple sponsors and donors. If sponsors and donors are from the pharmaceutical industry, they report these donations/sponsorships in the transparency register. (www.transparantieregister.nl).
