Limassol, Cyprus – 10-11 April 2025 – The picturesque coastal city of Limassol played host to the FH Europe Foundation's first in-person Ambassador Programme training event, a landmark gathering that brought together patient ambassadors, healthcare professionals, patient organisations and policy advisors from across Europe. Held under the auspices of the Cyprus Ministry of Health, the event was a resounding success, marked by insightful discussions, comprehensive educational sessions, and vibrant networking opportunities.
The event commenced with a warm welcome from Magdalena Daccord, CEO of FH Europe Foundation, Assoc. Prof. Andrie Panayiotou on behalf of Cyprus University of Technology, and Elsie Evans, Ambassador Programme Manager. Their opening remarks set the tone for the two-day training, highlighting the importance of advocacy in raising awareness and advancing the management of familial hypercholesterolaemia (FH).
Mr Evagoras Tambouris, Director of Nursing Services at the Cyprus Ministry of Health, extended a warm and gracious welcome to the participants, emphasising the significance of the programme in advancing the diagnosis and treatment of familial hypercholesterolaemia (FH). His heartfelt message highlighted the collaborative efforts and the vital role of advocacy in improving patient outcomes and raising awareness about FH, ensuring that more individuals receive timely and effective care.
Nicola Bedlington, Senior Policy Advisor, delivered an inspiring session on the role of advocacy in healthcare, emphasising the power of patient and citizen voices in shaping policy. This was followed by a heartfelt panel discussion moderated by Cheryl Lichaa, where patient ambassadors shared their personal stories and lived experiences, providing a poignant reminder of the human impact of FH and related conditions.
The morning sessions continued with a detailed presentation by Prof. Urh Grošelj, who provided a comprehensive overview of FH, its genetic basis, and the importance of early detection and treatment. The afternoon featured a strategic session on the European health policy landscape, co-presented by Dr Marius Geanta and Nicola Bedlington, which offered participants an understanding of EU health policy and its implications for FH advocacy.
Prof. Grošelj returned to the stage to discuss the critical role of early screening in preventing cardiovascular disease, followed by a session on the barriers and challenges in screening for genetic lipid disorders, with Magdalena Daccord. The day concluded with an introduction to the Personalised Communication Model (PCM), which is an important focus for the PERFECTO consortium. This was delivered by Dr Marius Geanta, and his associate Bianca Cucos and included an interactive PCM workshop that empowered ambassadors with practical communication skills.
The second day began with an online presentation by Prof. Zanfina Ademi on the cost-effectiveness of paediatric FH screening, providing a compelling economic argument for early detection. This was followed by a dynamic role-playing workshop facilitated by Assoc. Prof. Andrie Panayiotou, Dr Marius Geanta, Nicola Bedlington, and the ever-present assistance of Tomas de Jong, where participants practised their advocacy skills in simulated meetings with policymakers.
Prof. Albert Wiegman delivered an enlightening session on the similarities and differences among familial hyperlipidaemias, offering valuable insights into the genetic causes, symptoms, and treatment options for conditions such as HeFH, HoFH, elevated Lp(a), and FCS. Dr Angelos Kassianos then explored the psychological aspects of living with and advocating for these conditions, highlighting the emotional and behavioural dimensions of patient advocacy.
The event concluded with a session by Yiannoulla Koulla on the realities of advocacy work and her experience, followed by reflections and discussions on the next steps in the advocacy journey. Participants left the event feeling inspired and equipped with the knowledge and tools needed to drive meaningful change in their communities.
The training event was attended by a diverse group of representatives from countries including Australia, Austria, Belgium, Brussels, Cyprus, England, France, Germany, Greece, Ireland, Lebanon, the Netherlands, Poland, Romania, Scotland, Slovenia, Switzerland, the UK, and Ukraine. The collaborative spirit and shared commitment to improving the lives of individuals affected by FH and related genetic lipid disorders were evident throughout the event.
The FH Europe Foundation's first in-person Ambassador Programme training event in Limassol was a significant milestone in the foundation's ongoing efforts to enhance advocacy and support for individuals living with FH. The event's success was a testament to the dedication and expertise of all participants, speakers, and organisers. As the ambassadors return to their respective countries, they carry with them a renewed sense of purpose and a strengthened network of allies in the fight against FH.
On 18 April, we mark European Patients’ Rights Day – an important occasion dedicated to raising awareness of patients’ rights and promoting their protection across Europe. Established by Cittadinanzattiva/Active Citizenship Network in cooperation with various European citizens' organisations, the day is grounded in the European Charter of Patients’ Rights, which sets out 14 fundamental rights that should be recognised and respected in all healthcare systems.
This annual day of action reminds us that every person deserves access to safe, respectful and high-quality healthcare. It encourages all those involved in healthcare – from policymakers and professionals to patient advocates and citizens – to work together to protect and advance these rights.
Each year, the day is marked with public events, conferences and initiatives across Europe, often supported by institutions such as the European Parliament and the European Economic and Social Committee. It serves both as a moment to highlight progress and a platform to drive further improvements in patient care.
At FH Europe Foundation, we strongly support the principles behind European Patients’ Rights Day. Our work – focused on improving awareness, diagnosis and treatment of inherited lipid conditions such as familial hypercholesterolaemia (FH), Homozygous FH (HoFH), elevated Lp(a) and Familial Chylomicronaemia Syndrome (FCS) – is rooted in the belief that all patients deserve timely, accurate and person-centred care.
Outlined in the European Charter of Patients’ Rights, these rights form the backbone of a healthcare system that respects human dignity and promotes equity:
European Patients’ Rights Day is a timely reminder of the essential role that rights-based care plays in creating resilient, patient-focused healthcare systems. At FH Europe Foundation, we remain committed to working with our partners across Europe and beyond, to ensure that the voices of patients – especially those living with inherited lipid conditions – are heard, valued and protected.
By championing these rights together, we can help shape a future where all individuals receive the care, respect and support they deserve.
As part of our contribution to this year’s European Patients’ Rights Day, we are also sharing personal reflections from our community – sharing some of there views on what these rights mean in their daily lives. Alongside each of the 14 rights, you’ll find links to stories, insights and testimonials from individuals living with FH and related conditions, highlighting how these rights play out in practice and where gaps still remain.
These real-life experiences offer valuable context to the Charter and strengthen the call for health systems that truly put people first.
Explore the highlights from FH Europe's April 2025 Heart Beat newsletter to catch up on the latest updates in cardiovascular health, policy, and patient advocacy:
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Explore the highlights from FH Europe's March 2025 Heart Beat newsletter to catch up on the latest news and events in the world of cardiovascular health:
Subscribe to the Heart Beat News.