FH Europe Foundation
FHEF
FH Europe Foundation (FHEF) advocates for people with familial hyperlipidaemias—both common and rare.
ID: 250721196939-44
Lobbying Activity
Meeting with Olivér Várhelyi (Commissioner) and
18 Sept 2025 · Preparation for the upcoming EU Cardiovasular Action Plan
Response to EU cardiovascular health plan
17 Sept 2025
Familial hypercholesterolaemia (FH) and elevated lipoprotein(a) [Lp(a)] are the most common inherited lipid conditions in Europe. They are major drivers of premature heart attacks, strokes and other cardiovascular diseases, yet remain largely invisible to citizens and in public health strategies. Around one in 300 people live with FH and one in five with high Lp(a). These conditions cut lives short and place a heavy burden on families and societies. Most people affected are not diagnosed and therefore do not benefit from efficient treatment and care. Rare and severe inherited conditions, such as homozygous FH (HoFH) and familial chylomicronaemia syndrome (FCS), can be life-threatening if detection is delayed, yet no screening programmes exist. The Council Conclusions on Cardiovascular Health (2024) recognised lipid disorders, including high cholesterol and inherited conditions, as key priorities for action. The EU Cardiovascular Health Plan is a chance to act by putting prevention at the centre. Unlike lifestyle-related risks, FH and Lp(a) are genetic, unavoidable but manageable once identified. Simple, affordable blood tests can detect them early in life, allowing families and doctors to prevent heart attack risk for decades. Early action means fewer hospitalisations, heart attacks and years lost to illness. For FH, all forms of testing are more cost-effective than none. For Lp(a), a once-in-a-lifetime test can reclassify risk and guide tailored treatment. Research shows that integrating Lp(a) testing into prevention programmes is clinically effective and cost-saving. For every 10,000 people tested, up to 60 heart attacks, 13 strokes and 26 premature deaths can be avoided. By identifying high-risk individuals earlier, health systems can reduce the need for costly acute care, improve quality of life and prevent productivity losses due to sick leave or early retirement. Each 2040 test saves 174 per patient in the UK, $85 in Australia and up to $1,167 in the USA. Each missed opportunity represents decades of prevention lost. Beyond healthcare budgets, nationwide paediatric FH screening and systematic Lp(a) testing strengthen Europes competitiveness by protecting its workforce, making it both a health and an economic imperative. Cardiovascular health strategies must also address inequities from missed early diagnosis. Recognising the inherited and familial nature of these conditions allows one diagnosis to protect whole families across generations. Women are underdiagnosed, disadvantaged groups face higher barriers and many children remain undetected, despite reliable tests. A strong focus on equity is essential so that everyone, regardless of gender, background or income, has equal access to early detection and care. Innovation can drive this vision. Digital tools, AI and personalised prevention can predict risk more accurately and enable tailored care. Linking genetic and clinical data through the European Health Data Space can shift prevention from reactive to predictive. AI can identify hidden patterns, flag high-risk individuals earlier, and support effective care, while patient-centred approaches co-designed with those living with FH and elevated Lp(a) raise awareness, improve adherence and build trust. Systematically identifying and managing FH and high Lp(a) not only reduces healthcare costs and avoidable hospitalisations, but also delivers wider benefits for productivity, education, competitiveness and social equity. FH Europe calls on the European Commission to ensure that FH and Lp(a) testing and management are embedded in the EU Cardiovascular Health Plan. The EU can add value by supporting Member States to scale up effective screening and prevention measures, while respecting national competences. By aligning with the commitments of the Prague Declaration on FH and the Brussels Declaration on Lp(a), the Plan can provide a unifying framework that strengthens both European cooperation and national action.
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