The European Commission is preparing the first EU Screening Week, planned for 29 September–4 October 2026. Linked to World Heart Day, the EU Safe Hearts Plan and the Know Your Numbers campaign, the initiative aims to create a visible Europe-wide moment for prevention, screening and early detection.
The central message is simple: people should know important health numbers, including blood pressure, cholesterol and blood sugar, and be empowered to take preventive action before disease develops. The Commission hopes to mobilise activities in as many EU Member States as possible and establish EU Screening Week as an annual European initiative.
This is an important and timely opportunity for the inherited lipid disorders community. EU Screening Week begins only five days after FH Awareness Day on 24 September, creating a natural bridge between awareness of inherited cardiovascular risk and wider European action on prevention.
Why this matters for our community
The EU Safe Hearts Plan is built around three pillars: prevention, early detection and screening, treatment and care, including rehabilitation.
Importantly for our community, the Plan explicitly recognises familial hypercholesterolaemia (FH) and elevated lipoprotein(a) [Lp(a)] as inherited and severely underdiagnosed cardiovascular risk factors. It recognises the particular relevance of screening inherited conditions in children and young people and commits the European Commission to supporting Member States with FH early-detection and screening initiatives.
The Plan also specifically references the EU-funded PERFECTO FH and FH-EARLY projects.
This recognition matters because inherited lipid disorders are present from birth. Healthy lifestyles remain essential, but they cannot identify or remove inherited risk. Early lipid testing can identify affected children before symptoms appear, while cascade and reverse-cascade screening can identify parents, siblings and other relatives who may also be at risk.
EU Screening Week therefore offers an important opportunity to demonstrate that cardiovascular prevention must be life-course, personalised and family-based, not limited to adult health checks after decades of avoidable exposure to high cholesterol.
How can organisations take part?
Participation is intended to be broad and practical. Activities may include:
This means your organisation does not need to create an entirely new screening programme. Existing initiatives can be connected to EU Screening Week when they support prevention, early detection, health literacy and the objectives of the Safe Hearts Plan.
The Commission is preparing a central registration mechanism through which participating organisations will be able to provide information about their country, location and planned activities. A common visual identity and campaign toolkit are also expected, including logos, visual materials, templates, suggested messages and social media assets.
Participating activities may be mapped and promoted through European Commission communications channels. FH Europe Foundation will share the registration information and campaign materials with its Network as soon as they become formally available.
From consultation to implementation
FH Europe Foundation and its Network have contributed throughout the development of the Safe Hearts Plan and the future European cardiovascular health-check framework.
Our policy input has brought together evidence and recommendations from FH Europe Foundation, PERFECTO, FH-EARLY, PerMed FH, the Lp(a) International Task Force, patient organisations of the Network and individual Ambassadors, scientific and clinical experts.
Through the 2025 consultation on the overall EU cardiovascular health plan and the 2026 Call for Evidence on cardiovascular health checks, we advocated for:
We also highlighted opportunities to create synergies with early screening for other childhood conditions, including presymptomatic type 1 diabetes, through coordinated childhood health checks.
Evidence from PERFECTO was particularly important in demonstrating that screening is not simply a laboratory test. Successful programmes also require trusted communication, family and community engagement, support in navigating healthcare systems and deliberate action to address inequalities.
FH-EARLY is developing new approaches for earlier and more affordable diagnosis, risk stratification and precision prevention. The Brussels International Declaration on Lp(a) Testing and Management provides an additional roadmap for integrating systematic Lp(a) testing into cardiovascular prevention.
Momentum across the FH Europe Foundation Network
The European initiative comes against a backdrop of significant progress across the wider FHEF Network. Patient organisations, scientific societies, clinicians and national groups are increasingly advocating for better screening and stronger national cardiovascular health plans and strategies.
The response of the FHEF community to the European Commission’s consultation was remarkable. Patient organisations, Patient Ambassadors, clinicians, researchers and community advocates submitted feedback and contacted national decision-makers.
Following our call to action, advocacy letters were sent to Ministries of Health and policymakers in Austria, Cyprus, Germany, Greece, Ireland, Romania and the Netherlands.
The shared message was clear: inherited cardiovascular risk must be detected early, including through screening in childhood and preferably during the first decade of life. Read more about the community response.
This mobilisation helped move the discussion beyond conventional adult cardiovascular risk assessment. It reinforced the need to identify FH, HoFH, elevated Lp(a), FCS (familial chylomicronaemia syndrome) and other inherited lipid disorders before irreversible vascular damage or a cardiovascular event occurs.
France: a landmark achievement
On 20 July 2026, France promulgated a new law establishing a national strategy to prevent cardiovascular and neurovascular diseases.
Crucially, the legislation provides for an early screening appointment during the year following a child’s sixth birthday, including screening for familial hypercholesterolaemia.
This is an outstanding achievement for ANHET.f, the French FH and Lp(a) patient organisation and member of the FHEF Network, following more than a decade of evidence-based advocacy for universal early cholesterol screening.
The French development demonstrates how European ambitions for prevention can be translated into concrete national policy. Read the adopted French legislation.
New European scientific guidance
In May 2026, the European Atherosclerosis Society (EAS) published two major consensus statements. The updated consensus on FH in children and adolescents calls for paediatric screening programmes, revised diagnostic criteria, earlier treatment and Lp(a) measurement in children with suspected FH. The second consensus provides practical guidance on how lipid clinics and national lipid-clinic networks should be organised and funded, including staffing, registries, referral pathways, education and quality standards. Together, these publications connect early identification in childhood with the specialist services required to provide effective lifelong care.
Read the FH Europe Foundation overview of both consensus statements.
Luxembourg: translating experience into national screening
Luxembourg has introduced a free national FH screening programme for children aged 18 months, with cascade screening offered to first-degree relatives when a child is identified with FH. Additional pilot study, EARLIE, evaluated universal paediatric screening during school medical visits in Luxembourg. Among 1,860 participating children, capillary lipid testing identified three genetically confirmed cases of familial hypercholesterolaemia. Reverse cascade screening then uncovered five additional affected family members.
The screening offer and finger-prick test were well accepted, with only 1.6% of participating children declining blood sampling. However, half of the children with highly suspicious LDL cholesterol levels did not complete further assessment.
This finding highlights a crucial lesson: screening does not end with the test. Caregiver involvement, clear communication, and an effective follow-up pathway are essential to turn early detection into lifelong CVD prevention.
Read about the Luxembourg national screening programme and the practical lessons from the EARLIE pilot study here: https://www.atherosclerosis-journal.com/article/S0021-9150(26)00204-2/fulltext
Austria: a life-course approach to lipid health
The new Austrian Lipid Consensus 2026, developed by 32 experts representing 15 medical societies, provides interdisciplinary recommendations covering prevention and treatment from childhood to older age. It places the early identification and modern management of FH, elevated Lp(a) and other lipid disorders within a practical national framework for lifelong cardiovascular prevention.
Read the FH Europe Foundation update on the Austrian Lipid Consensus and the scientific consensus publication.
What happens next?
In response to EU Screening Week, FHEF together with the leaders of the EAS, Lp(a) International Task Force and the EAS FHSC – the Global FH Reigstry, has written to the Cabinet of European Commissioner for Health and Animal Welfare Olivér Várhelyi, offering practical support and collaboration around EU Screening Week.
We have proposed connecting the initiative with FH Awareness Day on 24 September. We have also invited the Commissioner to engage directly with young people living with FH and their families, connecting European policy with the everyday realities of people affected by inherited cardiovascular risk.
Furthermore, has adapted its FH Awareness Day 2026 programme and will launch a practical three-part webinar series. The webinars will help the community understand:
Dedicated community calls will take place on 18 and 25 August to introduce the campaign, explain how activities can qualify and clarify how members can participate in EU Screening Week.
We encourage all our Network members, Patient Ambassadors, friends, partners and supporters to take part by organising or promoting relevant activities—from webinars and awareness campaigns to community health checks and screening events—and by registering eligible initiatives through the European Commission platform once it opens.
One week. Millions of Europeans. One simple action for their health.
Related reading
A major new Austrian consensus brings together 32 experts from 15 medical societies and places early detection, personalised prevention and modern management of lipid disorders—including familial hypercholesterolaemia and elevated lipoprotein(a)—at the centre of cardiovascular health.
The Österreichischer Lipidkonsensus 2026, published in July 2026 in the Wiener klinische Wochenschrift, provides comprehensive, interdisciplinary and evidence-based recommendations for the prevention, diagnosis and treatment of lipid-associated conditions in Austria.
It is the first comprehensive Austrian update in this field since 2016. Covering the entire life course—from childhood and adolescence through adulthood and older age—the 69-page document brings together expertise from cardiology, paediatrics, internal medicine, endocrinology, diabetology, nephrology, neurology, laboratory medicine, obesity medicine and other relevant disciplines.
The consensus was developed by 32 experts representing 15 Austrian medical professional societies. The corresponding writing group was led by Professor Florian Kronenberg, together with Professor Florian Höllerl, Professor Helmut Brath and Dr Gersina Rega-Kaun. Professor Kronenberg is also Chair of the Lp(a) International Task Force, convened by FH Europe Foundation.
The Austrian Lipid Consensus goes beyond summarising international clinical recommendations. It translates the latest scientific evidence into a practical framework adapted to the Austrian healthcare system.
Alongside treatment targets and therapeutic choices, it addresses the conditions needed for effective implementation, including:
The document integrates established and emerging lipid measures—including LDL cholesterol, non-HDL cholesterol, ApoB and Lp(a)—with a differentiated assessment of cardiovascular risk. It considers not only an individual lipid result, but also diabetes, obesity, chronic kidney disease, endocrine disorders, inflammation and other risk modifiers.
Importantly, it includes dedicated sections on inherited lipid disorders such as heterozygous and homozygous familial hypercholesterolaemia, familial chylomicronaemia syndrome and elevated Lp(a). It also includes 28 frequently asked questions and responds directly to nine common myths and misleading claims related to lipid-lowering treatment.
This makes the consensus an important bridge between scientific evidence, clinical recommendations and health-system implementation.
A central message of the consensus is that cardiovascular risk depends not only on how high a person’s cholesterol is today, but also on how long the person has been exposed to elevated atherogenic lipids.
This is especially important in familial hypercholesterolaemia, where LDL cholesterol may be markedly elevated from birth. Delaying diagnosis until middle age—or until a first cardiovascular event—means losing decades during which prevention could have protected cardiovascular health.
The consensus therefore reinforces the principle of acting earlier, achieving lower lipid levels and maintaining effective management for longer.
A figure included in the document illustrates the effect of cumulative LDL cholesterol exposure in a person with heterozygous FH. It shows how early diagnosis and effective treatment can flatten the lifetime LDL burden, delay vascular ageing and potentially postpone cardiovascular events by decades.
One of the most significant elements of the consensus is its dedicated recommendation on paediatric familial hypercholesterolaemia screening.
The document recognises paediatric FH screening as an important primary-prevention measure and refers to its inclusion in the European Commission’s Public Health Best Practice Portal, as well as to the Prague Declaration on FH Paediatric Screening.
It states that early diagnosis and consistent lipid-lowering management are essential to prevent early vascular changes and ultimately reduce the risk of heart attack and stroke in adulthood.
The consensus recommends that an effective screening strategy should preferably be applied during childhood, between 1 and 10 years of age. Screening at this stage can:
Rather than relying on a single route to diagnosis, the consensus supports a combined screening strategy:
LDL cholesterol or total cholesterol should be measured in all children within a selected age group.
The consensus identifies the preferred overall window as between 1 and 10 years, although it does not prescribe one exact age or establish a complete national screening programme.
All first- and second-degree relatives of an identified person with FH should be offered testing.
Cascade screening is particularly effective because FH is inherited. Identifying one affected child or adult can lead to the detection of several additional family members who may otherwise remain undiagnosed.
LDL cholesterol should be added when a child or adult is already having blood taken for another clinical reason. This can help identify cases that would otherwise be missed.
As an additional approach, lipid testing should be performed when there is high cholesterol, relevant clinical evidence or a family history of premature cardiovascular disease. The consensus refers to the FHkids Austria initiative as an example of selective screening in preschool children and siblings.
The document does not currently recommend routine FH testing through newborn screening, mainly because LDL and total cholesterol fluctuate considerably in newborns and during the first year of life, making interpretation difficult. Research in this area is continuing.
Taken together, these recommendations send a strong message: selective screening based only on an already known family history is not enough. FH detection requires a coordinated combination of universal childhood screening, cascade testing, opportunistic testing and targeted clinical assessment.
The family dimension of FH screening is particularly important.
A child diagnosed through universal or opportunistic screening may be the first person in the family to be identified. Because FH is inherited, that diagnosis creates an opportunity to test parents, siblings and other close relatives.
In this way, paediatric screening is not only an intervention for children. It can also identify an affected parent before a heart attack or stroke occurs.
The consensus therefore supports a model in which childhood screening, family-based cascade screening, genetic assessment when appropriate and access to specialist care form part of one connected pathway.
This reflects the principle promoted by FH Europe Foundation and the Prague Declaration: finding one person with FH can help protect an entire family.
Elevated lipoprotein(a), or Lp(a), also receives prominent attention in the consensus.
The document recommends measuring Lp(a) at least once in every adult’s lifetime—ideally at a younger age and together with LDL cholesterol. It also recommends inviting parents, siblings and children for testing when a high Lp(a) level is identified.
Because Lp(a) is largely genetically determined, identifying an elevated level can provide important information for the individual and the wider family.
The document emphasises that high Lp(a) should not be viewed in isolation. It should be combined with traditional risk factors to determine a person’s overall cardiovascular risk and the intensity of preventive action required. Management may include more rigorous LDL-cholesterol lowering, improved blood-pressure and diabetes control, smoking prevention, physical activity and other lifestyle measures.
The Lp(a) pathway included in the consensus draws on the Brussels International Declaration on Lp(a) Testing and Management, developed through the Lp(a) International Task Force chaired by Professor Kronenberg.
The timing of the Austrian consensus is particularly important.
The European Commission’s Safe Hearts Plan and the Council Conclusions on cardiovascular health call for structured, life-course approaches to prevention, early detection and care. They identify metabolic risk factors and inherited lipid disorders—including FH and elevated Lp(a)—as important drivers of cardiovascular disease and priorities for systematic screening and intervention.
The Austrian authors explicitly describe the consensus as a national implementation of these European policy directions in lipidology.
It provides evidence-based recommendations for the early identification and consistent treatment of lipid disorders, with the objective of reducing cardiovascular events, premature mortality and related complications across Austria.
This is the kind of bridge Europe now needs: from the Safe Hearts Plan to national cardiovascular health plans, from national strategies to clinical pathways, and from clinical recommendations to earlier diagnosis and better outcomes for people and families.
FH Europe Foundation welcomes the publication of the Österreichischer Lipidkonsensus 2026 as an important contribution to cardiovascular health, prevention and the early identification of inherited risk.
Its interdisciplinary development, life-course perspective, practical orientation and strong recommendations on FH and Lp(a) make it relevant beyond Austria.
In particular, its support for combined FH screening—preferably during childhood between 1 and 10 years—offers an important model for countries developing national cardiovascular health plans and implementing the Safe Hearts Plan.
The scientific evidence is increasingly clear. The challenge now is implementation: ensuring that people are tested early, understand their risk, receive appropriate support and can access effective, continuous care.
Early detection is not simply about finding high cholesterol. It is about protecting healthy years of life—and, in inherited conditions, protecting entire families.
Read the open-access Austrian Lipid Consensus 2026
June was a month of advocacy, collaboration, and progress across the FH Europe Foundation network, with important developments in EU policy, rare disease advocacy, research, and patient engagement. As summer begins, our community continues to drive forward early detection, prevention, and equitable care for inherited lipid disorders.
Catch up on the key highlights from the June 2026 edition of Heart Beat:
For FH Europe Foundation, this means continuing not only to contribute to the discussion, but to champion the needs of our community—helping ensure that commitments made at European level translate into tangible improvements in people's lives.
Together with EURORDIS, RDI, and partners across the rare disease community, we remain dedicated to driving meaningful change. Central to this effort is ensuring that the voices of people living with HoFH, FCS, and other inherited lipid disorders, as well as their families, are not only heard but reflected in concrete actions and policies.
By bringing forward lived experiences, sharing evidence and insights from our key initiatives and EU-funded projects, and advocating for practical, measurable solutions, we aim to advance earlier detection, more effective prevention, and greater equity in care across Europe.