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.