The coming weeks could be a defining moment for early detection and prevention of inherited cardiovascular conditions across Europe. FH Europe Foundation is calling on patient organisations, Ambassadors, healthcare professionals and advocates to take one concrete action before 31 October to help strengthen the proposed EU Council Recommendation on Cardiovascular Health Checks and Early Screening.
Europe has an important opportunity to transform how cardiovascular diseases are prevented, detected and managed.
The European Commission's proposed Council Recommendation on Cardiovascular Health Checks and Early Screening, part of the wider momentum created by the EU Safe Hearts Plan, represents significant progress.
Thanks to sustained advocacy efforts across Europe, the proposal recognises familial hypercholesterolaemia (FH), elevated lipoprotein(a), triglycerides, inherited cardiovascular risk factors, family history, equity and the importance of follow-up care.
These are important achievements for our community.
But there is still a critical gap: the need to identify inherited cardiovascular risk much earlier in life, particularly during childhood.
For inherited conditions such as FH and homozygous familial hypercholesterolaemia (HoFH), risk begins at birth. If identification starts only in adulthood, valuable opportunities for prevention may already have been missed.
The first decades of life matter. Early detection can open the door to timely care, appropriate treatment and the prevention of cardiovascular complications later in life.
Every child deserves the opportunity for early detection, appropriate treatment and a healthier future.
For people and families affected by inherited lipid conditions, early detection is much more than a policy ambition.
Behind every delayed diagnosis is a child, a parent or a family member who may experience a preventable cardiovascular event before their inherited risk is recognised.
For some families, the first warning sign may be a heart attack or another serious cardiovascular complication.
Earlier identification is about preventing avoidable illness, disability and premature death. It is about giving families the knowledge and opportunities they need to protect their health before irreversible harm occurs.
This is why FH Europe Foundation and its community continue to advocate for a genuine life-course approach to cardiovascular prevention, including earlier identification, family-based screening, cascade screening, appropriate care and lifelong follow-up.
The coming weeks may be one of the last opportunities to influence the final recommendations before discussions progress further at national and EU level.
Once policy priorities are agreed, it becomes much harder to strengthen them.
The decisions made today could shape cardiovascular prevention strategies across Europe for years to come, influencing when people are tested, how inherited risk is recognised and whether families can access timely care.
The proposed Recommendation provides an important foundation. Now is the time to make sure that early identification of inherited cardiovascular risk, particularly in children and young people, receives the attention it deserves.
We have made progress together. Now we need to turn that progress into action.
Following our recent community advocacy briefings on 6 and 8 October, FH Europe Foundation is calling on patient organisations, Ambassadors, healthcare professionals, researchers and community advocates across Europe to mobilise before the end of October.
There are many ways to contribute to this collective effort:
Whether through a conversation, a letter, a meeting or a personal story, every contribution helps build momentum for earlier detection and better cardiovascular prevention across Europe.
The coming weeks are critical. Together, we can make sure the voices of people and families affected by inherited lipid conditions are heard when it matters most.
Meaningful policy change requires collaboration.
Patient organisations, clinicians, researchers, Ambassadors and advocates all have a role to play. Each brings a different perspective, from lived experience and clinical evidence to national screening practices and health system realities.
Our recent advocacy briefings brought community members together to discuss the proposed Recommendation, identify opportunities to strengthen it and explore practical ways to engage national decision makers.
The next step is to turn those discussions into coordinated action across Europe.
Whether you represent a national patient organisation, work in healthcare or research, or are personally affected by an inherited lipid condition, your perspective can help decision makers understand why earlier detection matters.
And you do not have to act alone.
FH Europe Foundation can help community members identify relevant contacts, prepare advocacy messages, share evidence and coordinate activities across countries.
To support advocacy at national level, FH Europe Foundation has gathered practical tools, policy documents, scientific guidance and examples of early screening initiatives.
Practical Advocacy Tools
European Policy Documents
Scientific Guidance and Evidence
Advocacy Declarations
Examples of Early Screening in Practice
These resources can help you build your arguments using scientific evidence, successful national examples and the experiences of people and families affected by inherited lipid conditions.
Whenever possible, complement them with local data, national examples and personal stories to make your message relevant to decision makers in your country.
We want to hear from you.
If you are planning to contact a policymaker, send a letter, arrange a meeting, share your story or support the campaign in another way, please let us know.
Tell us which country you represent, what action you are taking and whether you would benefit from support.
Sharing your activities and any responses received will help us coordinate efforts, identify opportunities for collaboration and amplify our collective voice across Europe.
Contact us at info@fheurope.org.
The decisions being made today could influence how inherited lipid conditions are identified, treated and prevented across Europe for a generation.
We have a rare opportunity to ensure that FH, HoFH, elevated Lp(a) and other inherited cardiovascular risk factors are recognised earlier and acted upon sooner.
Future families should not have to wait for a heart attack to discover they were at risk.
The science is advancing. The evidence for earlier detection is growing. Our community has helped bring inherited cardiovascular risk onto the European policy agenda.
Now we must make sure this progress translates into meaningful prevention for children, adults and families across Europe.
One action. One voice. One opportunity to make a difference.
Take action before 31 October. Help make earlier detection a European priority.
September was a month of action across the FH community, marked by FH Awareness Day, EU Screening Week, and growing momentum for earlier detection and prevention. Discover the latest advocacy updates, research, and opportunities to get involved.
Catch up on the key highlights from the September 2026 edition of Heart Beat:
On 28 September 2026, the European Commission published its Proposal for a Council Recommendation on cardiovascular health checks: an EU approach to early detection and screening. For FH Europe Foundation and our community, this is an important milestone and there is much to welcome.
The proposal takes forward one of the flagship initiatives of the EU Safe Hearts Plan and sets out a European approach to cardiovascular health checks and earlier detection. For people and families affected by inherited lipid disorders, several elements are particularly significant.
The proposal explicitly recognises familial hypercholesterolaemia (FH), elevated lipoprotein(a) [Lp(a)] and inherited or genetically influenced cardiovascular risk. For adults aged 35–64, the proposed health checks include a full lipid profile, comprising total cholesterol, LDL cholesterol, HDL cholesterol and triglycerides, together with Lp(a) measurement once in adulthood. Family history is recognised as an important part of cardiovascular risk assessment. The proposal also places strong emphasis on equitable access, reaching underserved populations, patient involvement, referral and follow-up, and personalised prevention.
For our FH, Lp(a), FCS and wider inherited lipid community, this represents significant progress. Issues we have collectively advocated for over many years are increasingly becoming part of mainstream European cardiovascular prevention policy.
At the same time, there is an important opportunity to go further. The proposal embraces a life-course approach to cardiovascular health. We strongly welcome this principle. But for inherited lipid disorders, a genuine life-course approach must begin early in life. FH does not begin at 35. A child with FH is born with the condition and experiences elevated LDL cholesterol from birth. Identifying that risk early creates the opportunity to intervene before decades of exposure have accumulated.
The proposed Annex includes a cardiovascular health check for people under 35 and recognises the importance of family history, but the explicit full lipid profile appears in the systematic health checks proposed for adults aged 35–64.
This is why FHEF will continue to advocate for stronger recognition of early detection during childhood, combining universal paediatric screening with cascade and reverse cascade screening. These approaches reinforce one another. Finding a child with FH can lead to the identification of an affected parent and other relatives. Finding an affected adult can lead us to children, siblings and other family members. One diagnosis can become an opportunity to protect an entire family.
The publication on 28 September is a major milestone, but it is not the end of the process. The European Commission has published a Proposal for a Council Recommendation. The proposal now moves into discussion between Member States in the Council before a final Recommendation can be adopted. Council Recommendations are not legally binding in the same way as EU Regulations or Directives. Instead, they provide a common European policy framework and recommended actions that Member States can translate into their national health systems. This means the next phase of advocacy increasingly moves from Brussels to national capitals.
Our approach is simple - protect what has been achieved, strengthen what is still missing, prepare for implementation. We want to protect the recognition of FH, Lp(a), triglycerides, family history and inherited risk. We want to strengthen the life-course approach so that early identification of inherited lipid disorders, including during childhood, is properly reflected. And ultimately, we want to help turn European recommendations into effective national screening, diagnosis, referral and care.
FHEF will be sending an official communication to the European Commission, welcoming the proposal and recognising the considerable progress it represents, while highlighting opportunities to strengthen early detection across the life course. At the same time, we are mobilising our Network. On 6 and 8 October, FHEF is hosting dedicated briefings with our Community Network Leaders, ambassadors and wider community to examine the proposal, discuss its implications and coordinate the next phase of national engagement. Our members will be encouraged to engage constructively with their Ministries of Health and national policymakers, using scientific evidence, national experience and the lived experience of families to support the next steps.
“The publication of this proposal is an important achievement. FH and Lp(a) are recognised, triglycerides are included, and inherited cardiovascular risk and family history are now clearly visible. There is much to celebrate. Now we have an opportunity to build on that progress and suggest some targeted tweaks that could make the recommendations even stronger.
For families affected by inherited lipid disorders, particularly FH and its rare and severe form such as HoFH, early detection must mean early in life, starting in childhood. A stronger life-course approach would also benefit children living with conditions such as type 1 diabetes. Our communities now have an opportunity to help turn this European ambition into meaningful prevention for children, adults and entire families.”
Magdalena Daccord, CEO, FH Europe Foundation
Young people living with inherited lipid conditions and rare diseases bring a unique perspective to healthcare, research and policy. They understand first-hand the realities of growing up with a chronic condition, navigating healthcare systems, managing treatment, balancing education or work, and planning for the future.
For many years, patient organisations have worked hard to ensure that the patient voice is heard. However, there are still too few opportunities specifically designed for young advocates to contribute their experiences, build skills and develop leadership networks. This is why the EPF Youth Congress 2026 is such an important milestone.
The Congress recognises that young people are not simply beneficiaries of healthcare policy. They are partners in shaping it. By bringing together young patient advocates, policymakers, researchers and healthcare professionals, the event creates a space where ideas can be exchanged, partnerships can be formed, and future leaders can emerge.
For the FH Europe Foundation community, this aligns closely with our commitment to empowering people affected by inherited lipid conditions, especially familial hypercholesterolaemia (HeFH and HoFH), elevated lipoprotein(a), FCS, and severe hypertriglyceridaemia. We know that meaningful change happens when people with lived experience are involved in discussions about research, education, awareness and policy.
Youth engagement is not just about representation. It is about creating opportunities for young people to grow their confidence, expand their networks and develop the skills needed to become effective advocates. These experiences often lead to greater involvement in patient organisations, research projects, advisory boards and policy initiatives. Many of the partnerships and collaborations that strengthen our community today started with a simple introduction, a conversation at an event, or a willingness to volunteer. That is why we are committed to helping young people connect with organisations and networks across Europe.
If you are interested in patient advocacy, healthcare policy, research, awareness raising, communications or community building, now is the perfect time to get involved. Whether you are already active in a patient organisation or taking your first steps into advocacy, there are opportunities to learn, contribute and make your voice heard.
Through our partnerships and networks, we can help introduce you to organisations, initiatives and opportunities that match your interests. We are also continuing to develop our own youth engagement activities and build a stronger youth community within FH Europe Foundation.
We are looking for enthusiastic young people who want to:
Your experience matters. Your insight matters. Your voice matters.
Join us in building a stronger, more connected and more empowered community of young advocates across Europe.
Interested? Contact elsie@fheurope.org and start the conversation today.
Written by Elsie Evans