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.
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.
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.
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.
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.
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.
Across Europe and beyond, FH Europe Foundation (FHEF) Patient Ambassadors are increasingly taking their place on international stages—bringing the lived experience of inherited lipid disorders to scientific congresses, policy discussions, industry forums and educational events. Their voices are helping to shape conversations, influence decisions and ensure that patients remain at the heart of research, innovation and healthcare. Only this month, our Ambassadors presented at two international conferences, a trilogy of webinars, and an industry meeting.
At the HTAi 2026 Annual Meeting in Istanbul, Marc Rijken from the Netherlands represented the patient perspective as a member of the Lp(a) International Task Force. Speaking during a session on implementing Lp(a) testing, Marc reminded delegates that behind every health technology assessment, reimbursement decision and policy recommendation is a person, a family and a life that may be profoundly affected. His contribution demonstrated why meaningful patient involvement is essential when shaping future health systems.
At Lp(a) Update 2026 in Munich, organised by the German Society for Lipidology (DGFL – Lipid-Liga), FHEF Ambassadors took centre stage in the opening session. Tobias Silberzahn (Germany) and Corinna Zangerl-Falkeis (Austria) shared their very different journeys with elevated Lipoprotein(a), highlighting the importance of early detection, health literacy, shared decision-making and personalised care.
Patient voices were equally powerful at an industry meeting in Athens, where Helga Davidson from Scotland shared her experience of living with familial chylomicronaemia syndrome (FCS). Speaking openly about her hopes, dreams, and the everyday challenges of living with a rare disease, Helga reminded participants that behind every diagnosis is a person striving to live a full and meaningful life.
Throughout the "A New Hope: HoFH Webinar Trilogy," patient ambassadors worked alongside internationally recognised clinicians, researchers and healthcare professionals to ensure that lived experience remained central to every discussion. In the first webinar, Chyrel Lichaa (Lebanon) moderated the session on early diagnosis, joined by Athanasios (Thanos) Pallidis (Greece), who shared the importance of timely diagnosis and family-centred care. The second webinar explored new treatment possibilities, moderated by Elsie Evans (UK/South Africa), with Olivia de Graaf (the Netherlands) sharing her personal experience of living with HoFH and the realities of evolving treatment options. The trilogy concludes with Joanna Kacprzak (Poland), who brings the perspective of patients and families, highlighting the emotional, psychological and practical realities of living with HoFH every day.
Together, these ambassadors are demonstrating that patient engagement is no longer an afterthought—it is an essential part of advancing research, improving healthcare and shaping policies that truly meet patients' needs. Whether speaking at international scientific congresses, contributing to health policy discussions, participating in industry meetings or educating healthcare professionals, every presentation, every panel discussion and every personal story helps build understanding, strengthen collaboration and inspire change.
At FH Europe Foundation, we are immensely proud of our Patient Ambassadors. Their courage, dedication and willingness to share their lived experiences continue to influence clinicians, researchers, industry leaders, policymakers and fellow patients across the world. By ensuring that the patient voice is seen, heard and valued, they are helping to build a future where everyone living with familial hypercholesterolaemia, elevated Lipoprotein(a), homozygous familial hypercholesterolaemia and familial chylomicronaemia syndrome can benefit from more person-centred, equitable and effective care.
Interested in becoming a certified Ambassador? Contact our team to learn about the next training programme.
Email: Elsie@fheurope.org