Brussels, March 24, 2025: One in five people globally—over 1.4 billion individuals—are living with elevated Lipoprotein(a) (Lp(a)), a significant, yet widely undetected inherited cardiovascular risk factor. Despite its clear link to premature heart attacks, strokes, and aortic stenosis, only 1%-2% of the population is tested, leaving millions vulnerable to preventable, life-threatening cardiovascular events.
The economic and healthcare burden of cardiovascular diseases (CVD) is staggering, with CVD costing the EU €282 billion annually[1]. Of this, €155 billion (55%) is spent on health and long-term care, accounting for 11% of total EU health expenditure. Productivity losses contribute €48 billion (17%), while informal care costs amount to €79 billion (28%). The economic impact translates to an average cost of €630 per person, with national variations ranging from €381 in Cyprus to €903 in Germany. Within these costs, coronary heart disease accounts for 27% (€77 billion), and cerebrovascular diseases account for 27% (€76 billion). These figures underline the urgent need for improved early detection and prevention strategies.
To address this urgent public health crisis, 50 leading global experts, policymakers, and patient representatives will convene for the first-ever Global Summit on Elevated Lp(a), coinciding with Lp(a) Awareness Day. This landmark event, hosted under the patronage of the Polish EU Presidency, is a direct response to growing EU and international commitments to tackle cardiovascular disease through prevention, early detection, and data-driven healthcare policies[2].
A Policy-Driven Scientific Summit to Address Lp(a) as a Public Health Priority
Living with elevated Lp(a) presents a significant emotional and practical burden for affected individuals and their families. Recent research highlights that many people with high Lp(a) levels only learn about their condition after experiencing a cardiovascular event, such as a heart attack or stroke, or due to a family history of cardiovascular disease. Despite medical guidelines advocating once-in-a-lifetime Lp(a) testing, many healthcare professionals are hesitant to test, often citing the lack of approved Lp(a)-lowering therapies. Patients and caregivers report frustration with the inconsistent and conflicting lifestyle advice they receive, with many feeling that their condition is largely invisible to the public and under-recognized by the medical community. The psychological impact of living with an increased, yet poorly understood, cardiovascular risk is significant, with many expressing anxiety, helplessness, and a desire for clearer, more structured medical guidance and emotional support. Patient Ambassadors underscore the urgent need to integrate Lp(a) testing into routine cardiovascular risk assessments and provide comprehensive support for those affected.[3]
Despite scientific consensus on the importance of once-in-a-lifetime Lp(a) testing[4], testing rates remain critically low due to a lack of awareness among healthcare professionals, as well as systemic barriers within health systems, including financial disincentives for preventive testing. There is also a misconception that testing is unnecessary in the absence of approved Lp(a)-specific therapies. Missed opportunities to leverage global risk management strategies further exacerbate the failure to prevent early cardiovascular events.
EU Leadership in Advancing Cardiovascular Health & EHDS Alignment
This Summit aligns with the EU’s emerging health policy developments, including the European Health Data Space (EHDS) and the recent Council Conclusions on Cardiovascular Health (December 2024), which emphasize the integration of cardiovascular disease risk assessments into national health policies, systematic data collection on CVD risk factors, including Lp(a), for better prevention and care, and investment in precision medicine and digital health tools to improve early detection and patient outcomes. The Summit will reinforce Lp(a) testing as a cornerstone of effective, personalized cardiovascular prevention, ensuring that health systems shift from reactive disease treatment to proactive and preventive health management.
Summit Highlights & Key Policy Announcements
A major highlight of the Summit will be the unveiling of the International Cost-Effectiveness Study on Lp(a) Testing, led by Prof. Zanfina Ademi (Monash University). This study provides irrefutable evidence that Lp(a) testing is economically viable and cost-effective, reinforcing its necessity as part of standard CVD risk assessment. Another key outcome will be the launch of the Brussels International Declaration on Lp(a), a policy blueprint outlining concrete steps for governments, policymakers, and health systems to implement routine Lp(a) testing. The Declaration is expected to be endorsed by leading global cardiovascular and patient advocacy organizations and serve as a reference for future cardiovascular health policies at the national, European, and international levels.
The Summit will be hosted by MEP Romana Jerkovic, Vice-Chair of the SANT Committee on Public Health and Chair of the MEP Cardiovascular Health Group, alongside MEP Adam Jarubas, Chair of the SANT Committee, and MEP András Kulja, with a welcome address from EU Commissioner for Health, Olivér Várhelyi, who has been invited.
A Multisectoral Call to Action
This unprecedented Summit is a flagship initiative of the Lp(a) International Taskforce, chaired by Prof. Florian Kronenberg (Austria), a lead author of the EAS Consensus Paper on Lp(a) Testing3, and is organized by the FH Europe Foundation, an umbrella patient organization dedicated to inherited lipid conditions and cardiovascular risk factors. Leading scientific, advocacy, and patient organizations backing the Summit include the World Heart Federation (WHF), the International Atherosclerosis Society (IAS), the Global Heart Hub, the European Alliance for Cardiovascular Health (EACH), and the European Atherosclerosis Society (EAS).
A Paradigm Shift: From Cardiovascular Disease to Cardiovascular Health
This Summit marks a seismic shift from merely treating cardiovascular disease to proactively safeguarding cardiovascular health. It is an opportunity for policymakers, healthcare leaders, and patient organizations to ensure that preventable heart disease remains preventable.
Voices from the Summit
Prof. Florian Kronenberg, Chair of the Lp(a) International Taskforce, emphasized that “This Summit unites scientific, political, and advocacy leaders to ensure that Lp(a) testing becomes a global standard. We must not only normalize testing but also support individuals in managing their health effectively.” Magdalena Daccord, CEO of FH Europe Foundation, added that “The Summit sets a powerful precedent. It amplifies the voices of people living with elevated Lp(a) and solidifies their role in shaping policies. The launch of the Brussels Declaration is just the beginning—our goal is to secure systematic Lp(a) testing and risk-based cardiovascular prevention for all.”
Summit Funding & Support
The work of the Lp(a) International Taskforce and the 1st Global Lp(a) Summit is supported through a collaborative effort, driven by the dedication of passionate experts, volunteers, and advocates who generously contribute their time, knowledge, and expertise as in-kind support and by funding from Amgen, Novartis, Roche Diagnostics, and Silence Therapeutics, in line with FHEF’s framework for cooperation with industry.
Further Information & Media Contact
For media inquiries, contact
Magdalena Daccord,
CEO, FH Europe Foundation
lpaglobalsummit@fheurope.org .
More details about:
[1] Economic burden of cardiovascular diseases in the European Union: a population-based cost study, https://pubmed.ncbi.nlm.nih.gov/37632363/
[2] Conclusions on the improvement of cardiovascular health in the European Union, 2024.12.03 - https://data.consilium.europa.eu/doc/document/ST-15315-2024-INIT/en/pdf
[3] Living with Elevated Lipoprotein(a) Levels: The Experiences of Patients and Caregivers https://pubmed.ncbi.nlm.nih.gov/40008374/
[4] Lipoprotein(a) in atherosclerotic cardiovascular disease and aortic stenosis: a European Atherosclerosis Society consensus statement https://pubmed.ncbi.nlm.nih.gov/36036785/
On March 11, 2025, the European Commission published its Critical Medicines Act proposal. This Act aims to make sure that important medicines are always available in the EU. It focuses on improving the availability, supply and production of these critical medicines (within the EU), especially for rare diseases and other essential treatments.
The CMA is part of a larger plan to strengthen the EU's healthcare system and make it more resilient to future crises. It includes measures to support important projects, improve supply chains, increase access to other important medicines (especially for rare diseases) and work with other countries to reduce reliance on single suppliers, aiming to address issues of some medicines not being available in certain markets.
This proposal marks a significant step toward ensuring that everyone in the EU has access to the medicines they need. You can read the full Critical Medicines Act proposal (PDF) or explore more details on the official EU website.
The Critical Medicines Act is vital for the FH Europe Foundation Community as it aims to ensure all EU citizens can access necessary medicines. This is especially important for those with rare diseases, who often struggle to get the treatments they need. By enhancing the supply chain and production of critical medicines, the CMA seeks to reduce shortages and make life-saving treatments available to those who need them most.
The key features of the Critical Medicines Act (CMA) for us:
These features aim to make sure that critical medicines are always available and that everyone in the EU can get the treatments they need.
How will it affect patients?
The Critical Medicines Act (CMA) will have several direct benefits for patients:
The Critical Medicines Act (CMA) includes a list of medicines considered essential for the health and well-being of EU citizens. This list is known as the Union list of critical medicines. It contains human medicines whose continued supply is a priority in the EU. The list is managed by the European Medicines Agency (EMA), the Heads of Medicines Agencies (HMA), and the European Commission. We will share some more information about these in the next Newsletter.
The medicines on this list typically include:
Overall, the CMA is designed to ensure that patients across the EU can reliably access the medicines they need, improving health outcomes and quality of life. These measures also aim to ensure that patients have continuous access to essential medicines, even during global crises or supply chain disruptions
We know that the Critical Medicines Act is focused on the EU, but it highlights a need for everyone in our community to have access to essential medicines. Ensuring that life-saving treatments and medicines for rare diseases are available to all is crucial for improving health outcomes and quality of life. This Act serves as a reminder of the importance of reliable access to medicines for everyone, regardless of where they live.
If you want to know more about why the CMA has been proposed, it is in the context of the European Health Union, which seeks to ensure that all EU citizens have access to necessary medicines. It complements regulatory measures already proposed, notably the reform of EU pharmaceutical legislation.
Related links:
Years ago, after giving birth with pre-eclampsia, I had to push to get my blood pressure checked afterwards. Looking back, I wonder if my pre-eclampsia was already a signal of my hereditary elevated Lp(a) at the time. It’s now thought that these two may often occur together, a quiet warning I missed back then.
It turned out I had developed chronic hypertension, and once again, I had to push to get it under control with medication. I’m grateful I did. At the time, I didn’t realise just how much it increased my risk of future cardiovascular disease (CVD). But taking my high blood pressure seriously after pregnancy turned out to be one of the best decisions I could have made for my health. That experience taught me how important it is to recognise and manage risk factors early.
Life has a funny way of connecting the dots, like meeting my husband at university when I was 19 and he was 18. We both signed up for courses, but I also signed up for him. What I didn’t know then was that heart health would become such a big part of our future.
Edwin has familial hypercholesterolaemia (FH), specifically heterozygous FH (HeFH), which runs strongly in his family. FH is an inherited lipid condition and a significant risk factor for cardiovascular disease. HeFH is the most common form of FH, affecting approximately 1 in 250 to 300 people worldwide. His father was once told he likely wouldn’t live past 50. When Edwin was diagnosed at 18, statins were just starting to make a difference. Thankfully, treatments have only improved since then.
When it came time to test our children, I was nervous but hopeful. Thankfully, neither inherited FH, but our son Aedan was found to have elevated Lp(a), something I’d never even heard of. I got tested too, and just like that, more pieces of my own story fell into place.
I thought of my dad. He died of a heart attack when I was just 30. Back then, it was called “bad luck.” But knowing what I know now, it seems likely that this hidden, inherited risk was quietly there all along.
That’s the thing about elevated Lp(a): it often stays invisible until heart disease has already happened. But with better awareness and early testing, we can change the story.
Why early detection matters
Without Edwin’s FH, Aedan and I might never have been tested. Our family’s story is proof of why early screening for inherited conditions like FH and Lp(a) matters so much. We’ve seen firsthand what a difference early diagnosis and the right treatment can make. Today, Edwin leads a healthy, active life. His father, once given a dire prognosis, is turning 80 this year. And he’s still going strong.
Knowing my increased cardiovascular risk, I’ve made deliberate lifestyle changes, improving my diet, exercising, managing my blood pressure, and lowering my LDL cholesterol. These are the things that help me feel confident about my health journey.
But it’s not just about better health. Cardiovascular disease costs the EU an estimated €282 billion annually in healthcare expenses and lost productivity. Early detection of FH and high Lp(a), combined with the right care, doesn’t just save lives, it helps reduce these costs.
Life keeps moving, and our health changes with it. Sometimes in ways we expect, and sometimes in ways that catch us by surprise. I even ended up with braces recently, which my children find endlessly amusing. But whether it’s visible changes like that, or the quieter ones happening inside our bodies, it’s a reminder that looking after our health is never a one-time thing.
And sometimes, no matter how closely you pay attention, things still slip through the cracks.
When your heart doesn’t play by the rules
I was recently diagnosed with INOCA (a condition causing reduced blood flow to the heart, not because of blocked arteries, but due to problems in the small vessels and spasms) after years of searching for answers. It took five cardiologists before I finally got the right diagnosis. For years, I experienced symptoms that slowly got worse. I've had painful experiences with ER visits, the local hospital, and specialists who primarily focus on male heart health and large vessels, while my smaller vessels were the true source of the problem.
My experience as a patient ambassador for the FH Europe Foundation has helped me speak up for myself, but the journey has been incredibly difficult and, at times, soul-crushing.
And I know I’m not alone in that. Women’s hearts are different, yet men’s remain the standard in cardiology. Despite progress, cardiologists in the Netherlands, and in many other countries, are still not required to study women’s cardiology. As a result, symptoms in women are often labelled “atypical”, simply because diagnostic frameworks were built around men.
No matter who you are, when you enter the ER, you take on the role of a patient, and sadly, you can be dismissed or misdiagnosed, especially women with heart conditions. Awareness and education are crucial to changing that.
And sometimes I wonder... maybe it’s no coincidence that I live with both elevated Lp(a) and INOCA. Science hasn’t connected those dots yet, but knowing how both quietly affect the vessels, I wouldn’t be surprised. Then again, I could be wrong.
What I do know for sure is that my story is just one of many. We all deserve to be seen, heard, and properly cared for.
Bringing hidden risks into the light
I never thought elevated Lp(a) would be part of my story. Knowing about it gives you the chance to stay ahead of the risks, take action, and have informed conversations with your doctor.
A single blood test can tell you your Lp(a) level. Unlike cholesterol, it stays constant throughout your life. If it’s elevated, it stays elevated. Yet most people have never even heard of it, even though 1 in 5 people worldwide have elevated levels.
That’s why testing matters. Early detection gives you and your doctor a clearer picture of your overall cardiovascular risk. And if your Lp(a) is high? Then it becomes even more important to manage the risk factors you can control, like your LDL cholesterol, blood pressure, smoking, and making healthy lifestyle choices.
Even though European clinical guidelines recommend Lp(a) testing for people with moderate to high cardiovascular risk, it’s still not widely included in national health policies across Europe. And globally, there’s even more work to do.
This is exactly why we need Lp(a) Awareness Day on 24 March. Because awareness is the first step towards change.
That’s why I’m excited about the upcoming Lp(a) Global Summit 2025 in Brussels. It will bring together experts, policymakers, and patient advocates to finally put Lp(a) on the global agenda and push forward better policies, research, and care.
And while we're here, please learn about INOCA, ANOCA, and MINOCA. These forms of heart disease don’t always show blocked arteries. Instead, they involve spasms, small vessel problems, or heart attacks without the usual blockages. They’re especially common in women, but far too often overlooked.
That needs to change.
Let’s make sure no risk stays hidden.
For ourselves. For our families. For future generations. 💙
👉 Learn more about INOCA, ANOCA, and MINOCA:
https://vrouwenhart.nl/category/coronaire-vaatdysfunctie/
https://inocainternational.com/
https://www.internationalheartspasmsalliance.org/
Prepared by: Renate Kaal-Poppelaars
FH Europe Foundation is proud to endorse the position paper titled "Strengthening Academic Biobanks and Patient Participation for Biomedical Research." This document, developed by organisations such as the German Biobank Node (GBN) and the German Biobank Alliance (GBA), highlights the critical role of centrally organised academic biobanks in advancing biomedical research and patient care.
As a community dedicated to supporting individuals and families affected by familial hyperlipidaemias (HeFH, HoFH, elevated Lp(a) and FCS) and other genetic lipid disorders, FH Europe Foundation recognises the immense value of biobanking in facilitating groundbreaking research. The position paper's emphasis on quality-assured biobanking, sustainable funding, and patient participation aligns perfectly with our mission to improve health outcomes through collaborative research and innovation.
We commend the authors for their insightful analysis and practical recommendations, which will undoubtedly enhance the efficiency and impact of biobanking initiatives. By fostering greater integration of biobanks into research projects and ensuring robust patient involvement, this position paper paves the way for more effective and patient-centred biomedical research.
FH Europe Foundation fully supports the call for increased cooperation with centrally organised academic biobanks and the adoption of participatory research approaches. We believe that these measures will not only advance scientific knowledge but also empower patients and their families by involving them directly in the research process.
We look forward to collaborating with the German Biobank Node, the German Biobank Alliance, and other stakeholders to implement the recommendations outlined in this position paper. Together, we can drive progress in biomedical research and improve the lives of those affected by genetic lipid disorders.
Read more about it here.