October was a month of meaningful connection, elevated advocacy and cross-community momentum for the FH Europe Foundation. Representing patient voices at major conferences, launching awareness drives and advancing research equity, the organisation continued to advance cardiovascular prevention and rare lipid disorder care.
Catch up on the key highlights from the October 2025 edition of the Heart Beat newsletter:
FH Europe Foundation News:
Ambassador Programme News
Research & Community Engagement:
Network News & Partner News:
News from around the World:
Knowledge Hub:
Important Dates you don´t want to miss:
Today, as we observe World Mental Health Day, we’re reminded that mental wellbeing is just as vital as physical health, especially for those living with rare conditions. For individuals with Familial Chylomicronaemia Syndrome (FCS) and Homozygous Familial Hypercholesterolaemia (HoFH), the challenges go far beyond clinical symptoms. The emotional toll of isolation, anxiety, and being misunderstood can be overwhelming.
At FH Europe Foundation (FHEF), we recognise that people living with inherited lipid conditions often face additional emotional and psychological challenges. The unpredictability of symptoms, restricted lifestyles, and frequent misunderstandings in healthcare settings can lead to loneliness and frustration. Especially in times of crisis, maintaining continuity of care and ensuring access to mental health support are essential.
That’s why we continue to actively engage with key European initiatives, such as the EURORDIS Mental Health & Wellbeing Toolkit, to better understand and address the mental health needs of our community.
The Mental Health & Wellbeing Toolkit developed by EURORDIS – Rare Diseases Europe is a comprehensive, evidence-informed resource designed to help people living with rare and undiagnosed conditions take practical steps toward better emotional wellbeing. It brings together neutral, accessible, and empowering tools co-created with patients, psychologists, and mental health professionals.
The toolkit offers:
More than just a collection of resources, the toolkit represents a shift toward holistic care, recognizing that mental wellbeing is inseparable from overall health and quality of life. It empowers individuals to take small, meaningful actions that foster control, connection, and hope in their daily lives.
Our FH Europe Patient Ambassadors, Patsy Petrie and Elsie Evans, have played a vital role in amplifying the voice of the rare lipid community within the EURORDIS initiative. By participating in virtual meetings and contributing their lived experiences, they ensure that the toolkit reflects the unique psychosocial realities of those living with FCS, HoFH, and other rare lipid disorders.
They also help to bridge the gap between clinical care and emotional wellbeing, encouraging peers to explore the toolkit, test its tools, and share honest feedback. Their involvement helps shape future versions of the resource to make it even more relevant and accessible to the lipid disorder community.
Through their stories and advocacy, our Ambassadors remind us that while medical management is crucial, empathy, understanding, and emotional support are equally essential in improving patients’ overall wellbeing.
Living with a rare disease is often an invisible struggle. Behind every diagnosis lies a personal story of resilience and quiet strength—but also moments of fear, isolation, and emotional fatigue. Members of our community have shared some of their reflections:
At FH Europe Foundation, we remain committed to supporting not only the physical health but also the emotional and psychological resilience of those affected by inherited lipid disorders. By promoting initiatives like the EURORDIS Mental Health Toolkit, listening to our community, and empowering our Ambassadors, we aim to ensure that mental health care becomes an integral part of rare disease management—not an afterthought.
Learn more about the EURORDIS Mental Health & Wellbeing Toolkit here: https://mhtoolkit.eurordis.org
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!