Published: June 30, 2026

Early Screening for Inherited Lipid Disorders: Thank You for Taking Action

The advocacy work to ensure that cardiovascular health checks in Europe include early screening for inherited lipid disorders continues—and thanks to your involvement, the momentum is growing. Over the past weeks, following our call to action, we have been pleased to see patient organisation leaders, individual patient ambassadors, clinical leaders, researchers and community advocates reaching out to their national Ministries of Health, Health Attachés and relevant policymakers. We have already received feedback that letters have been sent in Austria, Cyprus, Germany, Greece, Ireland, Romania, and the Netherlands. This is an important signal that our community is mobilising nationally at exactly the right moment.

Have you taken action?

If you or your organisation has contacted your Ministry of Health, Health Attaché or national policymakers, please let us know. We would also be grateful to hear whether you have received any response, acknowledgement, follow-up question, or invitation for further discussion. This information helps us understand where momentum is building, where further support may be needed, and how we can better coordinate our next steps across Europe.

A Strong Response from the Community

This national outreach builds on the exceptional response to the European Commission's Call for Evidence and Public Consultation on Cardiovascular Health Checks, which closed on 19 May. Thanks to your engagement, the voices of people living with familial hypercholesterolaemia (HeFH and HoFH), elevated lipoprotein(a) [Lp(a)], familial chylomicronaemia syndrome (FCS), other rare inherited lipid disorders, and all those at inherited cardiovascular risk were clearly heard throughout the consultation process. Your contributions helped reinforce a clear message: cardiovascular prevention must begin earlier—before disease develops, before irreversible vascular damage occurs, and before preventable cardiovascular events happen.

While awareness of inherited lipid disorders has grown considerably in recent years, we continue to encounter significant gaps in recognition and understanding among decision-makers and, at times, within healthcare systems. Familial hypercholesterolaemia (FH), despite affecting approximately 1 in 300 people, is still too often perceived as a rare disease, while elevated lipoprotein(a), affecting 1 in 5 people, remains largely overlooked despite being an established independent causal risk factor for cardiovascular disease. Likewise, the need for early screening during childhood is still not consistently recognised, despite an extensive and growing body of scientific, clinical, health-economic and implementation evidence.

This is precisely why informed, evidence-based advocacy is so important. Every action taken by our community is grounded in the latest research, international consensus statements, health-economic analyses and real-world implementation experience. Together, we are ensuring that policymakers have access to the evidence needed to develop policies that can prevent cardiovascular disease before it occurs.

Latest Policy Developments

Since our last communication, there has been another important development at European level. On 24 June, Members of the European Parliament adopted the own-initiative report "An EU Cardiovascular Diseases Strategy" (2025/2132(INI)), led by rapporteur Romana Jerković. This report marks a significant step forward. It sends a strong political signal from the European Parliament in support of coordinated EU action on cardiovascular health and provides an important contribution to the European Commission's work on the Safe Hearts Plan and the future Council Recommendation on Cardiovascular Health Checks.

We particularly welcome the report's strong focus on prevention as a cornerstone of EU health policy, starting in early childhood; Health in All Policies - embedding cardiovascular health across social, environmental and economic agendas; tackling modifiable risk factors, including tobacco, harmful alcohol consumption, unhealthy diets and physical inactivity; addressing socio-economic and environmental determinants that drive inequalities in cardiovascular outcomes and  empowering citizens through health literacy, education and equitable access to high-quality care.

A heartfelt thank you goes to Romana Jerković, the shadow rapporteurs and all Members of the European Parliament whose dedication has helped move cardiovascular health higher on the European political agenda.

Why This Matters Now

The public consultation may have closed, but the policy process is far from over. The European Commission is continuing to develop the future Council Recommendation on Cardiovascular Health Checks under the EU Safe Hearts Plan. Member States will play a critical role in shaping the final recommendation. The next phase is therefore national: ensuring that Ministries of Health and national representatives understand the evidence and implementation experience supporting early screening for inherited lipid disorders. This is our opportunity to ensure that the latest scientific evidence and practical implementation experience are reflected in the final recommendation before it is presented to Member States for further discussion after the summer.

Our shared objective remains clear: cardiovascular health checks should include early screening for inherited lipid disorders during the first decade of life, combined lipid profile and lipoprotein(a) assessment, cascade and reverse cascade screening, family-based prevention approaches, and integrated cardiovascular prevention pathways, including opportunities to build synergies with type 1 Diabetes.

Next Steps

There is still time to influence the process. We understand that after the summer, the European Commission will present its draft proposal to Member States for comments. This will be a crucial milestone and makes the coming weeks and months an important window for national advocacy. If you have not yet reached out to your Ministry of Health or national policymakers, we encourage you to do so using the template letter, policy brief, references and supporting materials previously shared. If you have already taken action, please tell us what happened.

Have you sent a letter?  Have you received an acknowledgement? Has your Ministry asked for more information? Have you been offered a meeting?
Every update matters. Together, we have helped bring inherited lipid disorders into the European cardiovascular policy conversation. Now is the time to ensure that this message reaches decision-makers in every Member State. Stay tuned—we will continue to keep you informed about developments, share the latest evidence, and provide further opportunities for coordinated action as the Safe Hearts Plan progresses.

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