The energy and unity sparked at our Annual Network Meeting in Croatia are already propelling us into an exceptionally active end of the year. With a full agenda of advocacy milestones, stakeholder engagements, and community initiatives ahead, the coming months will keep us moving with purpose. At the same time, we are gearing up for a pivotal moment in 2025: the European Cardiovascular Health Plan, where our collective voice and vision can help shape the future of heart health across Europe. Let’s carry this momentum into everything we do next.
FH EUROPE FOUNDATION NEWS
2025 Annual Network Meeting
Thank you to everyone who joined us in Zagreb (onsite and online) for the FH Europe Foundation Annual Network Meeting 2025. With more than 100 participants coming together, your energy, ideas and commitment made the event an inspiring success. Under the theme “Together, engaged for change!” we strengthened connections across our network, sparked fresh collaborations and celebrated the sense of community and friendship that define FH Europe Foundation. Your active participation helped renew our shared mission to close the gaps in awareness, diagnosis and care for people living with inherited lipid conditions. We are grateful to each of you for contributing to this vibrant movement for change and look forward to building on this momentum together.
FHEF at the European Parliament event
FHEF was honoured to join an event hosted by MEP Romana Jerković, highlighting Europe’s growing cardiovascular health crisis and the urgent need for coordinated action. Throughout the morning, leading experts from WHO, EHN, EKHA, ESC, EASD and major clinical and academic centres shared critical insights on prevention, multimorbidity and persistent gender and equity gaps in cardiovascular care. FHEF is proud to stand with policymakers, clinicians, patient organisations and researchers in advocating for stronger, evidence-based solutions that place heart health at the core of EU policy. Together, we can lessen the burden of cardiovascular disease and build a healthier future for all Europeans.
IC PerMed & EP PerMed Joint Conference
We were delighted to take part in the IC PerMed & EP PerMed Joint Conference (26-27 November 2025, Prague), marking a decade since the launch of the European strategy on personalised medicine. In a fantastic side-event, FH Europe Foundation—represented by our CEO, Magdalena Daccord, and Young Patients Ambassadors Dianne van Leeuwen and Olivia de Graaf—joined the live recording of the second season of “The Science of You by EP PerMed”, where the discussion focused on personalised approaches to cardiovascular diseases, especially lipid disorders. The participation of FH Europe Foundation and our Ambassadors underscored our commitment to bridging research, patient perspectives and policy—and reinforced the call for tailored, patient-centred strategies in cardiovascular and lipid care. We are proud to contribute our voice to this important European conversation and look forward to continuing collaboration across policy, science and patient advocacy.
Read more
Our European Parliament Event Report Is Now Available!
We’re pleased to share that the full report from our recent event at the European Parliament is now published. Inside, you’ll find key insights, highlights from the discussions, and reflections on the actions needed to drive meaningful progress for patients across Europe.
Read the full report and explore the outcomes of this important gathering.
FH Europe CEO Joins WHO Expert Group on Dyslipidaemia
Magdalena Daccord, CEO of the FH Europe Foundation, has been appointed by the World Health Organization (WHO) as an independent expert on its new Dyslipidaemia Guideline Development Group. The guideline for adults 40+ will help shape global policy, especially in low- and middle-income countries. Early discussions stress that inherited lipid disorders like FH must be detected early. FH Europe also welcomes experts Jeanine Roeters van Lennep and Kirsten Holven.
Read more
AMBASSADOR PROGRAMME NEWS
Ambassadors in Action at the Annual Network Meeting
FH Europe Foundation Ambassadors played a vibrant and essential role at the Annual Network Meeting 2025 in Zagreb, contributing as panel speakers, workshop leaders and even entertainers. Aedan Kaal, Chyrel Lichaa, Scott Reavis and Lena-Rosa Hanauer enriched the panel discussions, while Tobias Silberzahn and Madalina Iamadei led dynamic, engaging workshops. Marc Rijken added an energy boost with a lively exercise break during the Saturday session.
The youth group—Olivia de Graaf, Lena-Rosa Hanauer, Julia Jablonska, Aedan Kaal, Chyrel Lichaa, Maria Nassif and India Rijken—delivered a truly memorable performance, “Hearts of Gold – a poetic play about Lipids & Life,” which became a highlight of the Saturday Celebration Dinner. All our ambassadors remained active throughout, both in person and online, showcasing the strength, creativity and spirit of the FH Europe Foundation community.
Ambassadors joining the Patient Advocacy Academy
Demonstrating their dedication to informed and impactful advocacy, some of our Ambassadors—Renate Kaal-Poppelaars (the Netherlands), Scott Reavis (USA), Maria Nassif (Lebanon/France) and Maja Bartoszewicz-Moritz (Poland)—are currently taking part in the Patient Advocacy Academy training, building the expertise and confidence that will further empower our community’s voice. This learning journey strengthens their ability to navigate health systems, engage with policy-makers and represent the lived experience of people with inherited lipid conditions. Their commitment reflects the growing momentum within our network to elevate patient leadership and drive meaningful change across Europe and beyond.
Learn more about the program
RESEARCH PROJECTS
PERFECTO’s work is gaining Europe-wide recognition.
The newest JACARDI newsletter features the PERFECTO project, coordinated by the FH Europe Foundation, showcasing its role in reshaping prevention for familial hypercholesterolaemia, under the headline “Preventing the Preventable: How PERFECTO is Changing the Future of Heart Health.” This recognition highlights the growing importance of tackling familial hypercholesterolaemia, one of Europe’s most common yet persistently underdiagnosed genetic conditions. Through innovative FH paediatric screening pilots in Romania and Cyprus, a pioneering person-centred communication model, a societal return on investment framework, strengthened care pathways and citizen engagement efforts, and the empowerment of our Ambassadors, PERFECTO is driving a more equitable, prevention-focused approach to cardiovascular health across Europe. With EU Commissioner Olivér Várhelyi citing PERFECTO as an “exemplary case” for prevention, the project continues to demonstrate how early detection and collaborative action can help prevent the preventable.
Read more
FH-EARLY featured at EP PerMed conference
Members of the consortium are in Prague this week for the EP PerMed and IC PerMed Joint Conference, where Marius Geanta (Centre for Innovation in Medicine) and Magdalena Daccord (FH Europe Foundation), together with FH and HoFH Ambassadors, are showcasing the crucial role of society and individual experience in advancing personalised medicine. FH-EARLY was featured as a leading example of how patient perspectives can drive better research design and stronger real-world outcomes, with the project built from the outset around meaningful contributions from the Expert Patient Panel. Their presence highlights our commitment to ensuring that personalised medicine is shaped not only by scientific innovation but also by the voices and lived realities of those it aims to serve.
NETWORK NEWS
Two new members joining the network
This month also marks an exciting step forward for our community as two remarkable organisations join our shared effort to improve cardiovascular health worldwide. FH China, driven by its vision that Familial Hypercholesterolemia is no longer a threat to life, brings a strong commitment to early diagnosis, effective interventions, and empowering patients through evidence-based, patient-centred care. Alongside them, Corazón Sin Fronteras (Spain) enriches our network with its focus on cardiac rehabilitation, patient identification, access to treatment, and comprehensive programs in education, prevention, and early detection. Their missions strengthen our collective momentum, and we are delighted to welcome them into our network.
FHchol Austria
FHchol Austria Received €10,000 Donation from SPAR and UNIQA
FHchol Austria was awarded a €10,000 donation from SPAR and UNIQA, generated through SPAR’s employee health initiative focusing on fats and lipid awareness. Staff were encouraged to stay active and collectively reach 15 million steps from May to October via the SPAR health coach app. The goal was exceeded within a month, and by the end of the challenge, more than 81 million steps were recorded in support of FHchol.
Gaby Hanauer-Mader Award 2025 Honours Prof. Greber-Platzer
At FHchol Austria’s general assembly, the 2025 Gaby Hanauer-Mader Award was presented to Prof. Susanne Greber-Platzer, head of the children’s hospital at the Medical University of Vienna. A long-standing scientific board member, she has been instrumental in finding children with FH and launched the FHkids school project in 2016, expanded nationwide in 2024. The award was handed over by Gaby’s daughter, Lena-Rosa.
Global Heart Hub
Unite Summit 2025 Insights
The 5th Global Heart Hub Unite Summit united patient advocates, clinicians, researchers and policymakers to address one of today’s most urgent healthcare challenges: women’s cardiovascular health. Over three days, participants explored gaps in diagnosis, care and policy, while powerful stories and expert insights highlighted opportunities to advance global equity.
FH Europe Foundation, CEO Magdalena Daccord, contributed to the programme, presenting the Foundation’s work in inherited lipid disorders and key achievements in personalised prevention, precision medicine and policy. She underscored the importance of collaboration and ensuring rare diseases such as FCS and HoFH remain part of the equity agenda.
PARTNER NEWS
European Patients’ Forum (EPF)
EPF Congress 2025 – Shaping the Future of Healthcare
This week, FH Europe Foundation—represented by Magda Anthousi and Elsie Evans—took part in the European Patients’ Forum event, where high-level discussions explored the future of patient empowerment, digital transformation in healthcare, and the role of equitable access in shaping EU health policy. As an EPF Youth Group Member, Aedan Kaal—also FH Europe Foundation Ambassador—contributed an inspiring and articulate perspective on what meaningful youth engagement should look like in European health initiatives. Our Senior Policy Manager, Nicola Bedlington, also participated actively throughout the programme, bringing her deep policy expertise to conversations on co-creation, patient leadership and the evolving EU policy landscape. Their presence ensured that the voice of the lipid community—and the next generation of patient advocates—was strongly represented at this important gathering.
European Society of Cardiology (ESC)
ESC Digital & AI Summit
The first ESC Digital & AI Summit gathered healthcare, tech and policy leaders to explore how AI and digital innovation are transforming cardiovascular care. Highlights included voice-based heart failure monitoring, smartphone stethoscopes, and insights from European Commission representative Kyriacos Hatzaras on AI’s role in prevention, care pathways, and the upcoming EU Cardiovascular Health Plan. Key takeaways can be revisited here.
World Heart Federation (WHF)
World Heart Federation COP11 Side Event
Our partner, the World Heart Federation, hosted the side event “Turning Commitments into Care: Accelerating Article 14 Implementation”, shining a spotlight on global efforts to expand tobacco cessation services. With leadership from Panama and Uruguay and contributions from WHO, UICC, and other partners, the session highlighted practical strategies to strengthen health systems, improve access to treatment, and advance comprehensive tobacco control, particularly in low- and middle-income countries.
NEWS FROM AROUND THE WORLD
Heart Health India Foundation
Over the past months, Heart Health India Foundation (HHIF) has led a series of impactful community-focused initiatives across the country. Through its Cholesterol Awareness Program, HHIF delivered multiple in-person education sessions in hospitals in Prayagraj, New Delhi, and Belgaum, where cardiologists guided heart patients and caregivers on LDL-C management and cardiovascular risk. Complementing these on-ground efforts, HHIF advanced its Dil Ke Doubts webinar series with expert-led discussions on the links between diabetes and heart disease as well as the risks of a sedentary lifestyle, offering clear, practical advice for everyday heart-healthy living. Alongside these educational campaigns, HHIF strengthened community engagement through Dil Se Dil Ki Baat, a storytelling circle fostering shared experiences around heart health, and its ongoing Together on Thursday meetups, safe spaces where patients and caregivers reflect on wellbeing, routines, and the often-overlooked emotional load of caregiving. Together, these activities highlight HHIF’s commitment to awareness, empowerment, and the creation of supportive cardiovascular health communities across India.
Learn more about these activities
KNOWLEDGE HUB
Sex Differences and Similarities in the Management of FH
A recent study shows that even before puberty, girls tend to have slightly higher cholesterol levels than boys, but this difference disappears in children with familial hypercholesterolaemia (FH), a genetic condition that raises cholesterol. The findings support universal cholesterol screening for young children and suggest that using sex-specific reference values could help identify those at higher risk early. As highlighted by Raul Santos in an editorial, early detection and management of high cholesterol are key to preventing heart disease later in life, especially for children with genetic risk.
FH Europe Foundation World Health Summit Report
Focusing on insights relevant to cardiovascular diseases, FH Europe Foundation developed its own report on the latest World Health Summit. The report highlights advances in prevention, early diagnosis, and care management, as well as actionable strategies for reducing heart disease globally. It distils essential recommendations for clinicians, policymakers, and health systems to strengthen cardiovascular health worldwide.
The Challenge around Mental Health in Europe
Mental health in Europe is closely linked to social and economic factors that are often overlooked in traditional economic measures. As a result, the true cost of mental ill‑health—including lost productivity, disability, and social impact—remains under-recognised, leaving many people without adequate support and slowing progress toward stronger, more inclusive health systems. Read more
SAVE THE DATE
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December 4: ELPA event, Brussels, Belgium
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December 5-6: 2025 Global Forum, Glasgow, Scotland
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December 10-11: EACH Summit, Brussels, Belgium
