On 22 September, the Youth Advisory Group (YAG) of the JA PreventNCD took part in the European Commission’s online consultation on cardiovascular diseases (CVDs). The consultation was convened by DG SANTE as part of preparations for a new EU Cardiovascular Health (CVH) Plan. CVDs remain the leading cause of mortality in Europe, claiming over 1.7 million lives each year and costing the EU an estimated EUR 280 billion annually.
The event gave young people living with or at risk of cardiovascular disease, as well as youth advocates, an opportunity to directly share their experiences and expectations with policymakers.
The consultation, led by Antonio Parenti, director at DG SANTE, was framed around key questions from the European Commission, including how to support healthy lifestyles, ensure equal access to care, improve communication with young people, and shape a future EU prevention strategy. Youth delegates responded with lived experiences and concrete recommendations.
Key messages from youth
During the consultation, YAG members and other youth representatives raised strong, evidence-based recommendations across three central themes:
- Prevention and early action
Young people with lived experience of CVD shared the challenges of navigating their condition, including feelings of loneliness. They emphasised the importance of health education and building health literacy from an early age, starting in schools. The delegates highlighted the need for paediatric CVD screening, systemic approaches to prevention, and stronger policies addressing socioeconomic and commercial determinants of health. Physical activity and mental health promotion were underlined as cornerstones of prevention.
- Treatment, equal access, and supportive services
Youth participants spoke about the obstacles faced when trying to access treatments, medicines, digital tools, and specialised care. For those with rare conditions, isolation and inequality are particularly acute. They called for a health system that guarantees equal access regardless of gender, background, or geography. Support after diagnosis was also flagged as essential, with a call for integrated care models, psychological support, and patient “navigators” to help young people and families move through complex healthcare systems. Youth also highlighted a need for an integrated care model where support systems and care are available even after diagnosis and treatment, especially from the perspective of psychological support.
- Quality of life, innovation, and youth participation
Young delegates urged that the EU’s forthcoming CVH Plan take a holistic approach that mirrors the breadth of Europe’s Beating Cancer Plan. They stressed the importance of youth involvement as a cross-cutting priority and the need for ongoing innovation in prevention programmes. Civil society and youth organisations were recognised as key actors for building connections, reducing inequalities, and ensuring that policies reflect lived realities. The role of digital and AI tools was also discussed, with a clear message that these must be co-created with youth and patients to be accessible, transparent, and effective. Innovation, co-creation and social participation are essential to guarantee nobody is left behind.
“If the new Cardiovascular Health Plan is to be effective, prevention and equity must be at its core. Young people need health education, access to innovative and impactful prevention programmes, and a voice in shaping the policies that affect their lives. Civil society and youth organisations are not add-ons — they are essential partners in ensuring that no one is left behind.”
– Katja Čič, Youth Advisory Group Coordinator, JA PreventNCD
Building on good practice
The Youth Advisory Group also highlighted JA PreventNCD’s own experience of structurally embedding youth participation. They encouraged the European Commission to recognise the value of such models and make youth engagement a required feature of future EU4Health Joint Actions and related initiatives.
To make this opportunity more inclusive and representative, YAG reached out to external partners with strong patient networks, Global Heart Hub and FH Foundation Europe. Thanks to this partnership, several young people with lived experience of CVD and young patient advocates joined the delegation and actively participated in the consultation.
A call for meaningful engagement
Youth representatives underscored that cardiovascular health cannot be improved by medical treatment alone. Housing, nutrition, education, opportunities for physical activity, and protection from unhealthy commercial practices are all crucial elements. Several delegates called for stronger legislation in areas such as food labelling, marketing restrictions, and taxation of health-harming products, to support healthier environments for young people across Europe.
Looking ahead
he consultation closed with a sense of momentum. For many of the youth delegates, this was the first time their voices were directly heard in shaping EU-level health policy. Their interventions reinforced a simple truth: young people are not just the future of cardiovascular health—they are living with its challenges today.
"It was empowering to see young people being asked about what the priorities and actions should be in the upcoming Action Plan. I hope this goes beyond the protocols of good policy, and that comments are taken seriously regarding the prevention, detection and screening, and treatment and care of CVDs"
- Silvia Grothe, Youth Advisory Group Member, JA PreventNCD
JA PreventNCD will continue to support youth participation in health policymaking and share the outcomes of the consultation with consortium members and partners. By amplifying youth perspectives, the project contributes to building a stronger, more inclusive response to non-communicable diseases across Europe.