A silent connection between the mind and the heart
Every beat of the heart is influenced not only by biology, but by our thoughts, emotions, and sense of safety. Mental health, as how we think, feel, and cope, is inseparable from cardiovascular health. Yet for many living with inherited lipid disorders or other lifelong cardiovascular conditions, mental well-being remains the missing piece of care.
Living with a genetic lipid disorder, such as familial hypercholesterolaemia (FH), often begins with a diagnosis that reshapes a person’s self-image and future. The lifelong treatment journey, regular monitoring, lifestyle adjustments, and awareness of family risk can lead to chronic stress, anxiety, or depression. These feelings are not weakness, they are valid and biologically meaningful responses that, when unaddressed, can influence cardiovascular outcomes themselves.
The latest European Society of Cardiology (ESC) Clinical Consensus Statement on Mental Health and Cardiovascular Disease (2025) makes this connection unequivocally clear: mental health and cardiovascular disease (CVD) interact bidirectionally, each influencing the onset, course, and prognosis of the other.
The WHO’s 2025 call to action: Integrating mind and body
In June 2025, the World Health Assembly adopted Resolution WHA78, a landmark decision advancing the global agenda for noncommunicable diseases (NCDs) and mental health. The resolution explicitly links the NCD and mental health agendas, urging countries to integrate mental health promotion, prevention, and care into chronic disease services, and to address shared risk factors such as stress, stigma, and social inequality.
This recognition is critical. Cardiovascular diseases remain the leading cause of death globally and people with mental health conditions are at significantly higher risk of developing CVD, experiencing worse outcomes, and dying earlier than those without mental health challenges. Conversely, people diagnosed with CVD face a high prevalence of depression (up to 18%) and anxiety, according to the ESC statement.
The WHO resolution reinforces that mental health is not optional in chronic disease care, it is a determinant of survival and quality of life.
From evidence to empathy: What the science tells us
The 2025 ESC Consensus Statement synthesises decades of research and expert consensus, revealing several key insights:
For individuals living with inherited lipid disorders, these findings carry special relevance. Many experience “invisible stressors”: genetic guilt, fear of transmitting risk to children, or uncertainty about future cardiac events. These chronic emotional burdens can elevate stress hormones, impair sleep, and erode motivation to sustain lifestyle and medication adherence.
Bridging two worlds: The ESC’s “Psycho-Cardio” approach
One of the most transformative recommendations from the ESC is the creation of multidisciplinary “Psycho-Cardio Teams” care models that unite cardiologists, mental health professionals, nurses, and allied specialists in shared decision-making.
This model promotes the ACTIVE principles for care:
Such an integrated approach moves beyond treating cholesterol levels or blood pressure — it treats the whole person.
Inherited lipid disorders: Why mental health must be part of care
People with inherited lipid disorders often receive early and repeated exposure to medical surveillance. This can create “disease fatigue,” feelings of guilt or frustration about family implications, and a sense of isolation when peers don’t share the same health concerns.
Addressing mental health in this group is not only compassionate but clinically relevant:
Screening for mental health conditions should therefore become standard practice in lipid and cardiology clinics. Validated tools such as the Patient Health Questionnaire (PHQ) or Hospital Anxiety and Depression Scale (HADS) can be implemented easily and lead to early support or referral.
Caring for caregivers, too
The ESC statement also highlights the often-overlooked mental health of informal caregivers: parents managing their child’s lipid disorder, partners supporting someone after a cardiac event, or families dealing with generational risk. Emotional burnout among caregivers can diminish the entire family’s well-being and adherence to care plans. Recognising and supporting caregivers is an essential component of heart-healthy care.
"One day my daughter got diagnosed with Familia Chylomicronaemia Syndrome, FCS. Living with FCS means struggling everyday. It doesn't just affect her; it affects our whole family. I have lost my job, my health, both mental and physical. Rare diseases need your attention, your support, don't forget this."
Teevi Pobus,
a mother whose daughter is living with FCS
Turning awareness into action
For clinicians, policymakers, and patient communities, the path forward is clear:
As the WHO resolution underscores, integrating mental health into NCD services is both a human rights issue and a health systems priority.
A message for our community
To everyone living with an inherited lipid disorder or cardiovascular disease: your mental health matters as much as your lipid numbers. Feelings of fear, frustration, or sadness are not signs of failure, they are signals that your heart and mind need care together. Seeking psychological support is an act of strength, not weakness.
This World Mental Health Day, let’s take a collective step towards holistic heart care where emotional well-being and cardiovascular health beat in harmony.
Prepared by
Dr. Marina Leroy,
FH Europe Foundation Scientific Communications Manager
References
September was a landmark month for the FH Europe Foundation and its community—filled with advocacy milestones, inspiring events, and global collaboration. From the European Parliament to community health checks across Europe, momentum for cardiovascular prevention and patient-led change continues to grow.
Catch up on the key highlights from the September 2025 edition of the Heart Beat newsletter:
FH Europe Foundation News:
Ambassador Programme News:
News from our Research Projects:
Network & Partner News:
News from around the World:
Knowledge Hub:
Important dates you won’t want to miss!
On 25 September 2025, the European Parliament in Brussels became the stage for a decisive moment in the fight against cardiovascular disease. The high-level meeting, “Cardiovascular Prevention as the Cornerstone of a Competitive Europe – Scaling Up Lipid Screening to Secure Next Generations,” organised by FH Europe Foundation, was co-hosted by MEP Romana Jerković, Chair of the MEP Cardiovascular Health Group and rapporteur for the forthcoming EU Cardiovascular Health Plan, together with MEP Tomislav Sokol, EPP, member of the SANT Committee on Public Health.
The event marked ten years since FH Europe first brought the voices of patients to the European Parliament. A decade later, those voices are helping to shape policy. What began in 2015 as a plea for recognition of inherited lipid disorders has grown into a central pillar of Europe’s strategy to prevent cardiovascular disease and protect future generations. The occasion also provided an important platform to officially present the Brussels International Declaration on Lp(a) Testing and Management.
From Patient Appeals to Political Momentum
The meeting opened with a short film from 2015, a poignant reminder of the first FH Europe meeting in the Parliament and the perseverance of families who demanded action. Watch a video from the first EU Parliament event in 2015 here.
In her remarks, MEP Romana Jerković underlined that cardiovascular prevention is an investment in the next generation and in Europe’s competitiveness and highlighted the need for systematic lipid screening to be part of the EU’s future approach to cardiovascular health.
Patients and Youth Ambassadors at the Heart of the Story
The most compelling voices in the room came from the youth ambassadors and caregivers who live with the consequences of late or missed diagnoses.
Lena-Rosa Hanauer from Austria, also representing her national orgnisatin FHchol Austria, Joanna Kacprzak from Poland, Aedan Kaal from the Netherlands and Teevi Poobus from Estonia shared deeply personal stories that revealed the cost of delayed detection and the difference that timely screening and treatment can make.
Their testimonies transformed statistics into lived experience, a reminder that policy decisions directly shape lives. Their intervention underscored an urgent truth: preventable losses of time, health and life can no longer be tolerated, and patients and caregivers must guide the shaping of cardiovascular strategies.
A Decade of Progress Driven by Patients
Magdalena Daccord, CEO of FH Europe Foundation, traced the journey from a grass-roots NGO to a respected international partner for health policy change. She highlighted milestones that turned advocacy into policy: the EU Best Practice recognition of FH paediatric screening, the Prague Declaration (2022) on screening children for FH, and the Brussels International Declaration (2025) on Lp(a) testing and management.
Her message was clear and determined: the next decade must be about implementation, turning knowledge and commitments into action to prevent the preventable.
Turning Political Recognition into Action
Kitti Almer, Policy and Advocacy Manager at FH Europe Foundation and the former Health Attaché and Chair of the Public Health Working Party under the Hungarian Council Presidency, pointed to a decisive step forward: the Council Conclusions on Cardiovascular Health adopted in December 2024 , which for the first time identified FH and elevated Lp(a) as EU-wide priorities for early detection and prevention. She stressed that this progress now needs to be translated into national-level action plans under the forthcoming European Cardiovascular Health Plan. Learn more about the council conclusions here
MEP Tomislav Sokol highlighted the European Parliament’s duty to ensure that the political momentum of recent years results in binding commitments, funding and equitable implementation across all Member States. He framed prevention as both a moral imperative and an economic necessity, central to Europe’s competitiveness and resilience.
The Scientific Case for Early Prevention
The scientific sessions provided compelling, data-driven evidence that prevention works, and pays off.
Adding a crucial economic dimension, Professor Zanfina Ademi of Monash University and member of the Lp(a) International Taskforce, presented evidence that screening for FH and Lp(a) is not a cost burden but a preventive investment. Drawing on studies from the Netherlands and Australia, she showed that cascade screening and early treatment of children with FH increase life expectancy and reduce long-term costs, with every euro invested in the Dutch programme returning over €8 to the health system. Her analyses also found that Lp(a) testing is cost-saving in high-income countries from both healthcare and societal perspectives, strengthening the case for routine testing as part of prevention policies.
Professor Børge Nordestgaard of Denmark, President of the European Atherosclerosis Society, reminded participants that cardiovascular disease still causes one-third of all deaths in the EU, despite being largely preventable with modern therapies. He provided a very easy to follow overview of all four lipid disorders which were at the centre on the day, and called for earlier and broader screening, including during childhood vaccination visits and in adults at risk, and emphasised that “CVD in FH is 100% preventable using statins.”
Professor Albert Wiegman of the Netherlands, Trustee of FH Europe Foundation and a world-famous paediatric cardiologist specialising in inherited lipids disorders, , presented decades of evidence showing that early diagnosis in childhood dramatically reduces premature heart attacks. He described the Prague Declaration on FH screening as a “North Star” for health leaders, a guide showing that paediatric screening is lifesaving, cost-saving and equitable. showing that paediatric screening is lifesaving, cost-saving and equitable. Find the Prague Declaration lay version here
Professor Florian Kronenberg of Austria, a renown geneticist specialising in lipoprotein (a) and Chair of the Lp(a) International Taskforce, presented the challenge of Lp(a), noting that one in five people has elevated Lp(a) yet only 1–2% have ever been tested. He warned that high Lp(a) greatly increases the lifetime risk of heart attack and stroke and urged EU and national leaders to integrate Lp(a) testing into routine cardiovascular risk assessment. assessment. Find the Brussels Int. Declaration lay version, launched at the event, here
Innovation Driving Change
A session dedicated to innovation showcased how EU-funded projects – PERFECTO, PerMed FH and FH-EARLY – are combining genetics, artificial intelligence, behavioural science and patient co-design to close detection gaps and deliver practical, scalable models of care.
In a video address, Professor Fausto Pinto of Portugal, coordinator of FH-EARLY, underscored that “Innovation is not abstract. It is concrete, collaborative and actionable.” These projects are already influencing national activities and screening policies in Romania, Cyprus and Bulgaria, proving that European collaboration can translate scientific advances into tangible benefits for patients. Furthermore, they provide clear innovative and scalable solutions addressing personalised communication as presented by Dr Marius Geanta, founder and President of InoMed, cheaper and faster genetic testing which will improve personalised prevention by offering precise diagnosis and personalised management protocols as highlighted by Professor Mafalda Bourbon from Portugal, coordinator of PerMed FH consortium and the mastermind behind FH-EARLY's chip array solution. And the proofs are already visible, for example in Cyprus, where FH screening is being enhanced by implementing the personalised communication model as explained by Prof Andrie Panayiotou, President of the Cypriot Atherosclerosis Society and partner in PERFECTO FH consortium.
Collective effort
The event was endorsed by key leaders in the cardiovascular health and lipid field. FH Europe invited the European Alliance for Cardiovascular Health (EACH), the European Atherosclerosis Society, the International Atherosclerosis Society, and the Global Heart Hub to join the event and support the call by endorsing the meeting.
The meeting was made possible thanks to the support of the life sciences community, including Novartis, Amgen, MSD, Chiesi, Servier, and Menarini.
A special thanks goes to our moderator, Mădălina Iamandei, EU Affairs Director at the DGA Group and FH Europe’s most recent Ambassador, who skilfully guided the discussions and ensured all voices were heard.
A Shared European Responsibility
The meeting closed with a united call from the MEP hosts and patient leaders for political courage and national-level implementation, so that early detection and equitable access to treatment become the standard across Europe.
The discussion made one thing unmistakably clear: the forthcoming European Cardiovascular Health Plan can only succeed if it keeps patients’ needs and experiences at its core.
Ten years after FH Europe’s first meeting in the European Parliament, the organisation has shown how patient voices, united with science and political leadership, can transform public health policy. The next decade must deliver on the promise to “prevent the preventable” – protecting the hearts and futures of millions of Europeans.
The full report of the event will be shared soon.
Prepared by
Kitti Almer
FH Europe Foundation Policy and Advocacy Manager
On this year’s World Heart Day, nearly 300 participants came together online for a landmark EU Cardiovascular Health Plan stakeholder webinar, underscoring both the urgency and momentum for coordinated European action. Cardiovascular diseases (CVDs) remain the leading cause of death in Europe, claiming over 1.7 million lives each year and costing the EU about €280 billion annually.
The webinar’s timing could not have been more symbolic – and more practical. The European Commission is preparing the first-ever EU Cardiovascular Health Plan (CVH Plan), aiming to emulate the success of Europe’s Beating Cancer Plan with a comprehensive approach spanning prevention, early detection and screening, treatment, care, and rehabilitation – while also tackling cross-cutting priorities like research and innovation, digital health and AI, and health inequalities.
In a special video address, Commissioner Olivér Várhelyi highlighted that CVDs remain a “shared European challenge” and that this plan will help Member States coordinate efforts. He stressed that the initiative builds on the EU’s ‘Healthier Together’ programme and will link cardiovascular health with related areas such as diabetes and obesity.
A major focus will be on comprehensive cardiovascular health checks, powered by digital and AI-driven tools, to identify people at risk earlier and offer timely interventions. Várhelyi also underscored the importance of reducing inequalities across Member States and between different population groups.
This was not FH Europe Foundation’s (FHEF) first encounter with the Commissioner. FHEF team, together with Prof. Florian Kronenberg met with him on 18 September in Brussels, ahead of the webinar, to emphasise the importance of integrating inherited lipid disorders into the EU response to cardiovascular diseases.
“By working together, we can improve heart health for everyone,” Commissioner Várhelyi concluded, inviting all stakeholders to help shape and later deliver the plan.
Read more about the meeting with the Commissioner here.
Marianne Takki, representing DG SANTE, presented the European Commission’s current thinking and shared insights from the ‘Call for Evidence’ consultation, which ran from 11 August to 17 September and attracted 677 responses – with a strong 87% coming from EU Member States.
Ms. Takki highlighted that the consultation validated the Commission’s initial priorities:
She also stressed that health inequalities remain a core concern, with cardiovascular mortality rates up to seven times higher in some Member States. Ten countries already have national cardiovascular health plans, but more support is needed to close the gaps.
Research and innovation will play a crucial role in bridging knowledge gaps and translating findings into practice. EU investment in CVD-related research through Horizon 2020 and Horizon Europe has already reached €1.4 billion, with new opportunities on the horizon to address links between nutrition and cardiovascular health, as well as innovative care models.
Find the slides official slides from the webinar here.
The consultation and the webinar itself demonstrated how vibrant and committed the CVD stakeholder community is. Contributions came from patient organisations, clinicians, researchers, industry, and advocacy groups, all calling for bold and practical solutions.
Magdalena Daccord, CEO of FH Europe Foundation (FHEF), took the floor to represent the 90 million citizens in the European Union affected by inherited lipid disorders and related conditions. She emphasised the need to ensure that familial hypercholesterolaemia (FH), elevated lipoprotein (a) [Lp(a)], homozygous familial hypercholesterolaemia (HoFH), familial chylomicronaemia syndrome (FCS) and other inherited lipid disorders are explicitly addressed in the plan – both as a genetic risk factor for early-onset CVD and as a field where early screening and detection saves lives. She also raised the importance of tacking genetic discrimination when implementing early screening and detection.
FHEF, together with consortia PERFECTO FH, PerMed FH, FH_EARLY, and the Lp(a) International Taskforce as well as many FHEF Network patient organisations and individual patients, young ambassadors and experts also provided extensive feedback during the public consultations, ensuring that the voices of patients and their families were heard loud and clear.
Read the FHEF Response to the EC Consultation on CVH Plan for Europe_2025 here.
Many other stakeholders echoed complementary priorities:
The EU Cardiovascular Health Plan is expected to be finalised by the end of the year, informed by the rich input gathered through consultations and this webinar. The Commission has committed to working closely with Member States, stakeholders, and patients to ensure that the plan is comprehensive, equitable, and actionable.
For FHEF, the webinar marked another milestone in ongoing advocacy to ensure that inherited lipid disorders and early screening combined with family-based screening are fully integrated into the EU response to cardiovascular health challenges.
As the world marked World Heart Day, this discussion served as a powerful reminder that better heart health is not just a medical imperative – it is a societal commitment.
FH Europe Foundation remains dedicated to ensuring that the patient voice continues to guide this journey – from Brussels to every community across Europe and beyond.
Prepared by
Kitti Almer,
FHEF Policy and Advocacy Manager
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