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!
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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..
🔗 Register to attend the event
📄 See the full agenda
The ESC Congress 2025 in Madrid, held together with the World Congress of Cardiology, marked not only the 75th anniversary of the European Society of Cardiology (ESC) but also one of the most memorable gatherings in cardiovascular health to date. With more than 33,300 participants, 6,390 faculty and presenters, national cardiac societies, patient organisations, and industry partners, this year’s congress was both a scientific landmark and a celebration of community.
FH Europe Foundation was proud to play an active role in this milestone event, amplifying the patient voice and ensuring that familial hypercholesterolaemia (FH), elevated lipoprotein(a) [Lp(a)], familial chylomicronaemia syndrome (FCS), and the broader agenda of cardiovascular disease (CVD) prevention and early detection remained high on Europe’s policy map.
One of the defining moments of ESC 2025 was the presence of His Majesty King Felipe VI of Spain, who addressed a packed auditorium in a special session on “The Heart and Society”, alongside Spanish Minister of Health Mónica García Gómez, ESC President Thomas F. Lüscher, and Prof. Valentin Fuster.
His Majesty’s words underscored the importance of dialogue, collaboration, and collective responsibility in protecting heart health, while also symbolising Spain’s pioneering role as the first country to adopt a national cardiovascular health plan:
Further reinforcing this message, Spain’s Minister of Health Mrs Mónica García Gómez underwent a cardiovascular health check live at the congress – a powerful demonstration of the role of screening in preventing disease (including cholesterol and Lp(a) measurement).
At the Cardiovascular Community Breakfast organised by EFPIA, our Policy and Advocacy Manager Kitti Almer, delivered a strong intervention on how the forthcoming EU Cardiovascular Health Plan can best serve patients and Member States. Drawing on her experience as former Health Attaché of Hungary to the EU, Kitti highlighted the importance of early FH screening, cardiovascular health checks, and best-practice sharing to reduce Europe’s burden of disease.
She was joined by leading policymakers, including the Alternate Minister of Health of Greece, who shared inspiring insights into Greece’s prevention programme and its nationwide free testing initiative, including cholesterol and Lp(a) screening.
Our CEO, Magdalena Daccord, joined MSD’s multi-stakeholder symposium on “Shaping the Future of Cardiovascular Care: The Role of Patient Empowerment and Multi-Stakeholder Collaboration”. Moderated by Prof. Fausto Pinto, the discussion featured voices from science and advocacy, including Maite San Saturnino of the Spanish Heart Foundation, who shared patients’ experiences as well as their strategic role as advisors to the government in Spain.
Magdalena emphasised the importance of early detection, patient health literacy, building trust between patients and healthcare systems, and strong cross-sector collaboration to ensure patients are partners in decision-making at every level.
Magdalena also spoke at the ESC/SEC policy roundtable “Cardiology Beyond Borders”, joining European and international leaders (including representatives from the Spanish Ministry of Health, OECD, ESC, and industry) to debate how structured cardiovascular health plans and equitable access to care can be advanced across borders.
Finally, FH Europe Foundation brought the patient voice to the World Heart Federation’s regional roundtable on lipid management. Magdalena shared insights from projects such as PERFECTO FH, FH-EARLY, and PerMed FH, ensuring that lived experience informed discussions on achieving lipid targets among Europe’s high-risk populations. She then shared her recent positive learnings from Czechia, like an example of a Patient Advisory Board to the government, and her worries about the standards of care in adult HoFH patients.
Photo 4 Inherited lipid conditions such as FH and elevated Lp(a) were central to the debate, alongside national strategies presented by leaders including Dr. Rachel Yotti from the Spanish Ministry of Health, who highlighted Spain’s inclusion of FH screening in its national cardiovascular plan.
ESC 2025 was also a platform for groundbreaking scientific progress. Among the major announcements: Links
These new publications will guide clinical practice across Europe and reinforce the role of prevention, early detection, and patient-centred care. More to come with our dedicated announcement on the dyslipidaemia guidelines and free to public webinars.
The congress also offered an invaluable opportunity to connect with FH Europe Foundation’s industry partners, discuss the latest scientific data presented at the congress, and explore potential collaborations. These exchanges play a crucial role in fostering innovation, dialogue, and future partnerships, especially with the Senior Leadership present at the table.
Beyond policy and science, ESC 2025 embraced innovation and education. Our team experienced first-hand the cutting-edge use of virtual reality to demonstrate the behaviour of Lp(a) in the arteries – an engaging and powerful tool for connecting complex science with lived patient experience.
Just like the Spanish Minister of Health, our team joined thousands of delegates in undergoing the on-site free cardiovascular health checks offered at ESC 2025. Despite queues and waiting times of up to two hours, our team was warmly invited to participate, and we gladly took the opportunity.
The comprehensive screening included:
This experience was more than symbolic, it underlined our shared message that screening and early detection save lives, and that patient advocates, clinicians, policymakers, and industry leaders must all lead by example. Now awaiting the results...
ESC Congress 2025 was not just a scientific meeting, it was an unforgettable celebration of progress, collaboration, and community. For FH Europe Foundation, it was an opportunity to elevate the patient voice in European cardiovascular policy. Our Team advocated on behalf of people living with for FH, Lp(a), and rare inherited lipid conditions in prevention and detection strategies. While strengthening our collaborations across healthcare, research, policy, and industry, we were excited to celebrate the 75-year legacy of the ESC.
As we close this historic chapter in Madrid, we now look ahead to ESC Congress 2026 in Munich (28–31 August 2026), another step in our shared journey to advance knowledge, improve patient care, and prevent cardiovascular disease across Europe.
2025 Focused Update of the 2019 ESC/EAS Guidelines on Dyslipidaemia Management
We are pleased to share important news from the European Society of Cardiology (ESC) and the European Atherosclerosis Society (EAS). At the ESC Congress 2025 in Madrid, the societies jointly announced the publication of the 2025 Focused Update of the 2019 ESC/EAS Guidelines for the management of dyslipidaemias.
This update reflects the latest scientific evidence up to March 2025 and brings new recommendations that will directly impact the care and treatment of people living with lipid disorders – including those affected by familial hypercholesterolaemia (HeFH and HoFH), elevated lipoprotein(a) [Lp(a)], and familial chylomicronaemia syndrome (FCS).
Since the last full guidelines in 2019, many new clinical trials have been completed. Some of these trials have shown important benefits from newer treatments or clarified how existing therapies should be used. Because of this, the ESC and EAS decided not to wait until the next full guideline revision, but instead to publish a Focused Update, ensuring patients and doctors can benefit from the most up-to-date care recommendations right away.
🔹 New SCORE2 & SCORE2-OP risk algorithms for more accurate prediction of heart attack and stroke risk (What is SCORE*)
🔹 Introduction of bempedoic acid and evinacumab for LDL-C lowering
🔹 Early, intensive lipid-lowering therapy now recommended in heart attack (ACS) during hospital admission
🔹 Lp(a) >50 mg/dL (≥105 nmol/L) officially recognized as a cardiovascular risk modifier
🔹 Updated recommendations on hypertriglyceridaemia, including novel RNA-based therapies
🔹 Strong evidence for statins in people with HIV (REPRIEVE trial)
🔹 Guidance for cancer patients at high cardiovascular risk during chemotherapy
🔹 Clear statement: dietary supplements show no proven benefit for preventing heart disease
A step forward towards more personalised and aggressive prevention in high-risk patients.
Key Updates for Patients
Familial Hypercholesterolaemia (HeFH & HoFH)
For those living with inherited high cholesterol, the update introduces new therapies. Alongside statins, ezetimibe, and PCSK9 inhibitors, additional medicines such as bempedoic acid and, for HoFH, the antibody evinacumab, are now recommended as effective options. These treatments can provide stronger LDL-cholesterol lowering, where older drugs may not have been enough.
Elevated lipoprotein(a) [Lp(a)]
High levels of Lp(a) are now more clearly recognised as an important risk factor for heart disease and aortic valve disease. The guidelines recommend that everyone should have their Lp(a) checked at least once in their lifetime. For those with very high levels, the update advises early and intensive cholesterol-lowering treatment, even while we await the arrival of specific Lp(a)-lowering medicines currently in clinical trials.
Familial Chylomicronaemia Syndrome (FCS)
For the first time, the update makes a strong recommendation for volanesorsen, a treatment shown to lower triglycerides by up to 77% and reduce the risk of pancreatitis in people with FCS. This represents a major step forward for a condition that has long had very limited treatment options.
These updates are part of a continuing shift towards earlier, stronger, and more personalised lipid management. The message is clear: lowering LDL-cholesterol and addressing risk factors like Lp(a) and triglycerides saves lives.
The full guideline update has been published in both the European Heart Journal and Atherosclerosis.
And don’t forget: FHEF will host upcoming patient-friendly webinars to explain these changes further.
✨ Together, we are moving closer to a future where patients with inherited lipid disorders can live longer and healthier lives.