FH Europe Foundation, on behalf of the European Cardiovascular Health Alliance (EACH), is proud to invite you to a two-part Public Advocacy Webinar Series dedicated to unlocking the potential of the EU Council Conclusions on Cardiovascular Health and exploring the upcoming European Cardiovascular Health Plan.
Cardiovascular diseases (CVDs) are the leading cause of death in Europe, responsible for nearly 4 million deaths annually. Recognising the urgency, the Council of the EU adopted landmark conclusions in December 2024, calling for coordinated prevention and care strategies. The next day, the EU Commissioner for Health announced its intention to develop a comprehensive Cardiovascular Health Plan.
These webinars aim to equip patients, advocates, professionals, and organisations with the tools and insights needed to take action at both EU and national levels.
You will learn:
Speakers:
Choose your session:
To accommodate different schedules and reach as many people as possible, we’re offering two webinar dates with identical content and different representatives from ESC.
⏰ Duration: 60 minutes (incl. Q&A)
🗣️ Language: English
🎟️ Open to the public – patients, advocates, professionals, policymakers
By attending, you’ll gain the knowledge and tools to become part of a broader European movement for cardiovascular health.
Together, let’s translate policy into progress.
Part of the Data Saves Lives Initiative
The European Patients’ Forum (EPF) has launched a new toolkit to help people understand the European Health Data Space (EHDS). This is part of the Data Saves Lives initiative.
What is the European Health Data Space (EHDS)?
The EHDS is a major EU Regulation that aims to give every EU citizen access to their health data – wherever they are in the EU, and to ensure that the data can move with them, no matter where in the EU they go.
A recent webinar hosted by EPF explained the EHDS journey. Our ambassadors took part in the training, and here are their key takeaways.
What Will Change?
Example: If you fall ill on holiday in Spain, a doctor there can access your records (with your permission) to give you safe and effective care.
Two Ways Your Data Can Be Used
Examples:
This data can be shared with other healthcare providers with your permission. You stay in control by:
Examples:
Your data is anonymised or pseudonymised (your name is removed). You can say no to this kind of use.
Note: In emergencies like pandemics, exceptions may apply.
Your Rights & Privacy
Who Oversees the EHDS?
Each EU country will have two main bodies:
What Can Patient Organisations Do?
Toolkit Suggestions:
Key Dates
| Year | What’s Happening |
| 2025 | EHDS becomes law |
| 2027 | Basic data (e.g. prescriptions) shared across EU |
| 2029 | Includes lab results, scans, discharge letters |
| 2031 | More data types added |
| 2033 | First EU Commission review |
| 2035 | Fully working system across the EU |
Why Is EHDS Important?
For Patients:
For Doctors:
For Researchers & Policymakers:
Final Thoughts
The EHDS is a big step forward, but there are challenges:
The toolkit encourages patient organisations to stay engaged and help build a system that is safe, fair, and easy to understand.
Why It Matters for the FH Europe Foundation Community
For the FH Europe Foundation Community – which includes people living with familial hypercholesterolaemia (FH) and other inherited lipid conditions – the EHDS offers a vital opportunity. It can improve early diagnosis, enable better-coordinated care across borders, and support research into rare and underdiagnosed conditions. By contributing to and benefiting from high-quality, secure data sharing, the community can help shape a future where personalised, timely, and effective care is available to all, no matter where they live in the EU.
🔗 Want to learn more? Visit the Data Saves Lives website.
📺 Watch this clip – What is Data Saves Lives
Special thanks to our ambassador, Renate Kaal-Poppelars, for sharing her insights and contributing to this piece.
Are you ready to make a difference and showcase your creative talents? We, the HoFH community under the umbrella of FH Europe Foundation, call on all artists, designers, and creative enthusiasts from all walks of life to participate in our exciting logo competition for HoFH Awareness Day!
Whether you’re a professional designer or simply someone who enjoys using art to tell meaningful stories, this is your opportunity to contribute to a powerful cause. Your design could help raise global awareness about a rare and life-threatening condition—and bring hope to those affected.
What is HoFH? HoFH is a rare genetic condition that affects individuals from all backgrounds and walks of life. It's characterised by dangerously high levels of LDL cholesterol, leading to an increased risk of premature cardiovascular disease. Despite its rarity, HoFH can profoundly impact individuals and families, making awareness and support crucial. HoFH is a genetic condition, when a child inherits a copy of the same FH-causing gene from both parents. Although it is very severe and rare, it can be treated effectively. Yet, awareness, diagnosis and equitable access to medication is a serious issue, leaving many at a risk of heart attacks and even death very early in childhood.
Why a Logo Competition? Why engage the Public? We believe that raising awareness starts with a powerful symbol that resonates with people from all walks of life. That's why we're inviting YOU to design and inspire the official logo for HoFH Awareness Day! Your design will serve as a beacon of hope, unity, and support for those affected by HoFH, while also raising awareness in the wider community and helping prevent the preventable.
Galaxy Forces United: For HoFH Awareness Day!
Your design will inspire the official logo for HoFH Awareness Day, leaving a lasting impact on the global community.
For inspiration, hear the stories from some our ambassadors on our HoFH webpage
Chyrel Lichaa (Read bio)
HoFH Patient Ambassador
Lebanon
Prof. Albert Wiegman (Read bio)
Paediatrician
The Netherlands
Prof. Marina Cuchel (Read bio)
Researcher
USA
Mateusz Szwachta (Read bio)
EAS Communication & Community Manager
Sweden
Maja Bartoszewicz Moritz (Read bio)
FHEF Rare Disease Project Manager
Poland
Marc Salloum (Read bio)
HoFH Patient Ambassador
Lebanon
Don't miss your chance to be part of something meaningful and make a difference in the fight against a rare and severe cardiovascular disease. Join us in raising awareness, promoting unity, and empowering individuals and families affected by HoFH. Together, we can create a brighter future for all.
For more information and updates, visit www.fhef.org, follow #Unite4HoFH or contact us at chyrel@fheurope.org or maja@fheurope.org.
Get creative, get involved, and let's unite for HoFH awareness!
Amsterdam, 5 May 2025 – Today, during a packed session at the European Atherosclerosis Society Congress in Glasgow, the Brussels International Declaration on Lipoprotein(a) [Lp(a)] Testing and Management was officially published in Atherosclerosis. With more than 250 attendees crowding into a standing-room-only space designed for 30, this launch marked a breakthrough moment in the fight against cardiovascular disease.
Elevated Lp(a) is an inherited, lifelong, and independent risk factor for heart attacks, strokes, aortic stenosis, and premature cardiovascular events. Affecting an estimated 1 in 5 people worldwide, more than 1.4 billion individuals, it remains dangerously underdiagnosed, with less than 2% of the population tested. This significant public health blind spot urgently demands international attention.
The Declaration was developed by the Lp(a) International Task Force (ITF), a multidisciplinary, multistakeholder group convened by the FH Europe Foundation and chaired by Professor Florian Kronenberg. The ITF aims to deliver an ambitious, five-year global strategy to make Lp(a) testing routine and ensure equitable management across populations. The work was shaped by scientific evidence, the lived experience of patients, and the political momentum generated at the first-ever Global Lp(a) Summit, held in Brussels in March 2025. The Summit was hosted by a Member of the European Parliament (MEP), Romana JERKOVIĆ, Chair of the MEP Cardiovascular Health Group, and under the patronage of the Polish EU Presidency. The event, organised by FH Europe Foundation, brought together cardiovascular health organisations, scientific experts, patient ambassadors and policy makers from the European Union and World Health Organisation.
During the Summit the results of the first international cost-effectiveness study on Lp(a) testing were shared. The research commissioned by the patient organisation and led by Prof. Zanfina Ademi of Monash University, showed the clear economic and health system benefits of incorporating Lp(a) testing into standard care.
The Brussels International Declaration builds upon the 2022 EAS Consensus Statement on Lp(a) and directly supports the ambitions of the Council Conclusions on Cardiovascular Health, adopted by all EU health ministers on December 3rd, 2024. It arrives as Europe advances towards a dedicated Cardiovascular Health Plan, planned to be published later in 2025.
Accompanied by an editorial from renowned cardiovascular leaders (Professors Jan Borén, M. John Chapman, and Chris J. Packard), the Declaration outlines five urgent policy asks:
Transformational digital tools and ethical artificial intelligence are recognised as key enablers for the implementation of systematic Lp(a) testing and the effective, personalised management of elevated Lp(a) levels. In line with the commitments set out in the Brussels Int. Declaration, progress would be driven through cross-border shared learning, robust impact assessment, and comprehensive monitoring and evaluation on an annual basis.
"The Declaration is the result of truly global collaboration," said Prof. Florian Kronenberg, Chair of the ITF. "With science, policy, and patient voices aligned, we can shift from fixing damage to preventing it. This is the future of cardiovascular health."
MEP Romana JERKOVIĆ, Chair of the MEP Cardiovascular Health Group and Host of the Summit, said “I will be taking the Brussels International Declaration on Lp(a) to the MEP Cardiovascular Health Group and ask for their endorsement. The train has left the station, and it is imperative we act in this space”.
Prof. Florian Kronenberg added: “It is not only that the scientific evidence is overwhelming. Enormous monetary savings are possible by introducing a more systematic measurement of Lp(a) in combination with the other traditional risk factors followed by the appropriate preventive treatment. Thereby much of the associated impairment of our fellow citizens through frequent heart attacks and strokes could be prevented. A shift from “we try to fix the damage” - which is often not possible - into the direction “prevent the preventable” must be the focus of the upcoming years. Each year of prevention we lose for the given individual, puts her/him at more danger."
Developed with the support of over 40 international authors and partners including the World Heart Federation, European Alliance for Cardiovascular Health, International Atherosclerosis Society, European Atherosclerosis Society, Global Heart Hub, and leading life sciences stakeholders, the Declaration is now open for endorsement by individuals, institutions, and governments worldwide. “This Declaration is the result of truly global collaboration,” said Magdalena Daccord, CEO OF FH Europe Foundation. “It reflects the best of what science, policy, and patient voices can achieve together. With political will, health system action, and citizen engagement, we can dramatically shift how Lp(a) is addressed—and how many lives are saved.”
The Declaration is now open for endorsement by individuals, health professionals, scientific societies, institutions, and governments worldwide.