On the 18th of September, in Brussels, FH Europe Foundation representatives had the opportunity to meet with EU Commissioner Olivér Várhelyi and exchange views on the forthcoming EU Cardiovascular Health Plan. The discussion shed light on one of the most urgent yet overlooked challenges in cardiovascular health: common but underdiagnosed conditions such as familial hypercholesterolaemia (FH) and elevated lipoprotein(a) [Lp(a)], as well as truly rare disorders like homozygous familial hypercholesterolaemia (HoFH) and familial chylomicronaemia syndrome (FCS).
Following the meeting, Commissioner Várhelyi captured the scale of the problem in his post on X:
“Around 90 million Europeans live with inherited lipid disorders – yet 98% of Lp(a) cases & 90% of Familial Hypercholesterolemia remain undiagnosed. Our EU CVD Action Plan will tackle this by boosting early detection and treatment for all living with cardiovascular conditions.”
These numbers underline the stark reality: millions of Europeans live with conditions that dramatically increase their risk of heart attack or stroke yet remain undetected and untreated. Without action, inherited lipid disorders silently pass from one generation to the next, with devastating consequences for families and health systems alike.
Representing the FH Europe Foundation community, Magdalena Daccord (CEO), Prof. Florian Kronenberg (Chair of the Lp(a) International Taskforce), and Kitti Almer (Policy and Advocacy Manager) stressed the urgent need for:
This meeting reinforced FH Europe Foundation’s long-standing commitment to advocating for those affected by inherited lipid disorders. As the EU prepares to launch its Cardiovascular Health Plan, FH Europe stands ready to support its implementation and to ensure that undiagnosed no longer means untreated.
Together, we can #PreventThePreventable and change the future of cardiovascular health in Europe.
Prepared by
Kitti Almer,
FHEF Policy and Advocacy Manager
Join us at the European Parliament or online – 25 September 2025
In just 10 days, on Thursday, 25 September 2025, leaders, policymakers, researchers, clinicians, and patient advocates will gather at the European Parliament in Brussels (and online) for the high-level event:
“Cardiovascular Prevention as the Cornerstone of a Competitive Europe – Scaling Up Lipid Screening to Secure Next Generations.”
Ten years ago, FH Europe Foundation held its first-ever high-level event on familial hypercholesterolaemia (FH) paediatric screening in the European Parliament. It was a pioneering milestone that put inherited lipid disorders firmly on the political agenda. A decade later, the urgency remains the same: we can no longer wait.
That is why this meeting is more than a Parliament event; it's a call to action. It builds on the foundation laid by the Prague Declaration on FH Paediatric Screening and the Brussels Declaration on Lp(a) Testing and Management. It’s part of a movement that places inherited lipid conditions at the centre of cardiovascular prevention strategies, where they have always belonged.
We invite policymakers, clinicians, researchers, patient advocates, and citizens to join us as we take the next step. In person or online, your voice matters.
We are excited that the event will be co-hosted by MEP Romana Jerković, Chair of the MEP Cardiovascular Health Group, and MEP Tomislav Sokol, Member of SANT Committee on Public Health—underlining strong political momentum to put early detection, screening, and personalised prevention at the heart of Europe’s health and competitiveness agenda.
At the centre of the programme are the FH Europe Foundation Ambassadors – Lena-Rosa Hanauer (Austria), Joanna Kacprzak (Poland), Aedan Kaal (Netherlands), and Teevi Poobus (Estonia) – who will share their lived experiences and speak not only on behalf of themselves, but for millions of children, families and undiagnosed individuals across Europe.
📅 Thursday, 25 September 2025
🕒 15:00–17:00 CET
📍 European Parliament, Brussels (Room ASP 3H1) & Online
🔗Register now to attend in person or online.
👉 In-person attendance is subject to confirmation due to limited capacity. Online participation is open to all.
Registration deadline for in-person is Thursday, 18 September by noon (12.00 CEST).
Together, we can secure a future where no one is left behind by inherited cardiovascular risk.
As summer winds down, momentum is just ramping up: with back-to-school season and major events on the horizon, it’s the perfect time to reconnect, share insights, and drive collective impact.
Explore the highlights from FH Europe's end of Summer 2025 Heart Beat newsletter to catch up on the latest news and events in the world of cardiovascular health:
Ambassador Programme News
News from our Research Projects
Network & Partner News:
For and from our Ambassadors:
Important dates you won’t want to miss!
Subscribe to the Heart Beat News.
Join us at the European Parliament or online – 25 September 2025
Ten years ago, FH Europe Foundation held its first-ever high-level event on familial hypercholesterolaemia (FH) paediatric screening in the European Parliament. It was a pioneering moment—one that put inherited lipid disorders on the political map.
A decade later, the message remains urgent and unchanged: we can no longer wait.
On Thursday, 25 September 2025, we return to the European Parliament in Brussels to mark this milestone and elevate the conversation to new heights. Hosted by MEP Romana Jerković, Chair of the MEP Group on Cardiovascular Health and Vice-Chair of the European Parliament Committee on Public Health (SANT), this high-level event calls for decisive action to make early detection, screening and personalised prevention for inherited dyslipidaemias a European and global priority.
At the heart of this event are the FH Europe Foundation Patient Ambassadors, individuals who are transforming their lived experience into lasting impact. Lena-Rosa Hanauer (Austria), Joanna Kacprzak (Poland), Aedan Kaal (Netherlands), and Teevi Poobus (Estonia) will take the floor to speak not only on behalf of themselves, but for millions of children, families and undiagnosed individuals across Europe. These are not token testimonials. They are examples of leadership in action, and they represent FH Europe's broader commitment to capacity building and empowering the next generation of advocates. Through Ambassadors’ training, mentoring, and public engagement, FH Europe continues to ensure that those most affected by inherited lipid disorders have a seat and a voice at the decision-making table.
With cardiovascular disease (CVD) still the leading cause of death in Europe, the human, social, and economic cost of inaction is no longer acceptable.
Familial Hypercholesterolaemia (FH), elevated Lipoprotein(a) [Lp(a)], and rarer lipid conditions like Homozygous FH (HoFH) and Familial Chylomicronaemia Syndrome (FCS) collectively affect over 1.4 billion people globally but they remain largely underdiagnosed and undertreated.
The publication of the Prague Declaration in 2022 on FH paediatric screening and Brussels International Declaration on Lp(a) Testing and Management in May, followed by the first-ever global cost-effectiveness study on Lp(a) testing in primary prevention mid of August, gives us the data and momentum to act.
In the context of the forthcoming EU Cardiovascular Health Plan, this meeting will explore how we can move from declarations to implementation and why this matters not only for public health, but also for Europe’s competitiveness, innovation capacity, and research leadership.
By investing in early screening and prevention, we not only save lives—we protect productivity, reduce health system strain, and pave the way for a healthier, stronger, and more equitable Europe.
The event will bring together an exceptional mix of scientific expertise, personal experience, and high-level policymaking. From cutting-edge research and economic evidence to real-life stories from those living with inherited lipid conditions, the programme promises a rich, multidimensional dialogue.
In addition to heartfelt testimonies from FH Europe’s Patient Ambassadors, participants will hear from world-renowned researchers and clinicians, representatives from European institutions and global health organisations, and leading voices from the patient advocacy community. Topics will include the future of early screening and detection in Europe, as well as updates on key EU-funded projects such as PERFECTO, PerMed FH, and FH-EARLY—highlighting how personalised and population-level approaches can work hand-in-hand to transform prevention.
To explore the full list of speakers and sessions, we invite you to view the detailed agenda here.
This meeting is more than a Parliament event; it's a call to action. It builds on the foundation laid by the Prague Declaration on FH Paediatric Screening and the Brussels Declaration on Lp(a) Testing and Management. It’s part of a movement that places inherited lipid conditions at the centre of cardiovascular prevention strategies, where they have always belonged.
We invite policymakers, clinicians, researchers, patient advocates, and citizens to join us as we take the next step. In person or online, your voice matters.
Together, we can secure a future where no one is left behind by inherited cardiovascular risk. Join us online or in person. Registration deadline for in person is..