Watch this video to hear Joanna share her journey living with HoFH
Joint Statement – Investing in Health for Europe’s Competitiveness, Resilience and Long-Term Growth
Amsterdam, 20 April 2026 - The European cardiovascular health and cancer communities have issued a strong appeal to the EU Heads of State and Government to make health investment a sustained priority ahead of their European Council (EUCO) Summit on 23–24 April.
The joint statement, signed by the European Alliance on Cardiovascular Health (EACH) and the European Cancer Organisation (ECO), calls for health to remain effectively protected and adequately funded within the future European Competitiveness Fund as part of the EU’s next Multiannual Financial Framework (MFF) for 2028–2034.
Cardiovascular disease and cancer are the leading causes of morbidity and mortality in the European Union. Together, they are responsible for nine million diagnoses and almost three million deaths each year. Beyond the profound human toll, these conditions cost the EU close to €500 billion annually [1], driving up avoidable healthcare costs, reducing workforce productivity, and adding pressures on social systems.
The time for political action is now
EU citizens have consistently placed public health among their biggest concerns and ranked it at the top of their priorities for the EU budget in the latest Eurobarometer edition [2]. Members of the European Parliament have also given overwhelming support for a dedicated EU health programme within the proposed budget [3]. However, health is not yet treated as the political priority it must be—despite its scale, cost and impact. It is now up to EU Heads of State and Government to translate this ambition into concrete investments and policy commitments.
If Europe is to remain resilient in the face of geopolitical instability, economic pressure, and future health crises and a leader in science and innovation, it must significantly scale up investment in cardiovascular and cancer care and research, two areas representing the highest disease burden and among the most vulnerable to disruption when health systems come under strain.
The joint statement calls on EU Heads of State and Government to:
Funding health is not a cost — it is a strategic investment in Europe’s future.
As the European Parliament lead committee on the Report on the Regulation establishing the European Competitiveness Fund, the Committee on Industry, Research and Energy (ITRE) holds a decisive responsibility in safeguarding Europe’s progress, ambition, and global leadership in the fight against cancer.
Against this backdrop, and with the deadline to table amendments set for 6 May, the EU’s cancer and cardiovascular communities urge all members of the ITRE Committee to table targeted amendments, prioritising the following statement:
‘The EU4Health programme has demonstrated its value as a transformative instrument for strengthening public health systems and securing the Union’s strategic autonomy. Recognising that a healthy population and a resilient workforce are fundamental to European competitiveness, health must remain a standalone programme with strong levels of dedicated funding to implement the EU Safe Hearts Plan and sustain the progress of Europe’s Beating Cancer Plan.’
FH Europe Foundation, Partner of the EACH, stands ready to work with EU institutions and Member States to ensure that Europe’s competitiveness agenda fully reflects the strategic importance of investing in health.
Download the Joint Statement incl. Amendments
References
[1] The close to €500 billion estimation was created by summing the burden of cardiovascular disease and cancer from two sources:
[2] Standard Eurobarometer 104 - Autumn 2025 – On the question QF3ab: ‘And on which of the following would you like EU budget to be spent firstly? Any others?’ The answer: ‘Employment, social affairs and public health was placed on top, maintaining stable support when compared to the previous edition’.
[3] On 4 February 2026, the European Parliament called for the EU to renew its political commitment, funding and coordination to support full implementation of Europe’s Beating Cancer Plan, with 427 votes in favour, 15 against and 93 abstentions. The call also highlighted the need for a dedicated EU health programme in the next EU’s next long-term budget. More information here.
About EACH
The European Alliance for Cardiovascular Health (EACH) brings together 23 leading European and international organisations to promote cardiovascular health as a policy priority at EU level. The Alliance provides a platform to aggregate knowledge and expertise of key stakeholders active in the field of cardiovascular health, and to advise and guide policymakers. The Alliance calls for greater focus on improving cardiovascular health and reducing the burden cardiovascular disease at European level.
About the European Cancer Organisation
The European Cancer Organisation (ECO) is the largest non-profit, multi-professional federation in the European cancer community. It brings together hundreds of different professional societies and patient groups to advocate for more effective, efficient, and equitable cancer care. More information is available here.
For more information, please contact:
| EACH – Sophie Millar
EACH Secretariat each@escardio.org |
ECO - Alvaro Jimber
ECO Communications Officer alvaro.jimber@europeancancer.org |
March was a month of awareness, collaboration, and forward-looking advocacy across our community. With a strong focus on Lp(a) Awareness Day, policy engagement, and ongoing research initiatives, we continued driving progress toward earlier detection, improved care pathways, and stronger patient voices in FH and rare lipid disorders.
Catch up on the key highlights from the March 2026 edition of Heart Beat:
February was a month of remembrance, advocacy, and renewed momentum across our community. From Rare Disease Day to European policy engagement and research collaboration, we continued advancing earlier detection, equitable care, and stronger patient representation in FH and rare lipid disorders.
Catch up on the key highlights from the February 2026 edition of Heart Beat:
Rare Disease Day is a global moment to highlight the realities faced by people living with rare conditions, from delayed diagnosis to limited treatment options and unequal access to care. For many patients, the challenge is not only the disease itself, but also navigating healthcare systems, finding specialists, and gaining access to life-saving therapies.
In this interview, Joanna shares her experience living with homozygous familial hypercholesterolaemia (HoFH), a rare genetic condition causing extremely high cholesterol levels from birth and significantly increasing the risk of early cardiovascular disease. Her story reflects the long journey many rare disease patients face: growing up with limited treatment options, searching for specialists, and relying on determination, family support, and medical progress to access the care they need. Joanna’s perspective highlights why early diagnosis, innovation in treatment, and more predictable access to care are so important for the rare disease community.
The journey: Where it all started
This illness was already known in my family before I was born, because my older sister had symptoms. In the 70s and 80s in Poland, there were no proper treatment options, and the disease turned out to be the most aggressive type. My sister passed away.
When I was born and doctors found the same condition, they could start acting right away. At first, a liver transplant was considered the best solution, but in the 90s in Poland, this area of medicine wasn’t very advanced, so the decision was postponed while doctors searched for other treatments.
I was taking medications that weren’t originally meant to fight cholesterol. They helped a little, and my health was constantly monitored to see whether atherosclerosis was progressing. My case was consulted with doctors across Europe, and medications and supplements were brought in to support me.
I was very lucky and it was also thanks to my family’s dedication. They took care of me every day from a very young age. Because of that, I managed to stay in good condition and reach 36. Now that medicine has advanced and my treatment is better adjusted, I feel much more at peace about my future.
Can you tell us about your condition and what living with it looks like day to day?
It’s a genetic liver disease where the liver doesn’t have the receptors needed to metabolise cholesterol. In a healthy body, cholesterol is captured and processed by the liver. In mine, it isn’t. Right after I was born, my cholesterol levels were extremely high and kept rising, which meant a real risk of atherosclerosis even in childhood.
Lowering cholesterol has always been essential. Today, thanks to medical advances, life is easier than before, but I still have to stay on medication, follow a healthy diet, and remain physically active. All three are necessary and have become part of my everyday life.
I also wish people understood that this is a disease you can’t see. It doesn’t cause pain and may not limit you day to day, but it’s very dangerous: a silent killer. That’s why early diagnosis and access to the right treatment are so important.
On the importance of access to care
One of the hardest moments was realising that my cholesterol was still too high, even with the strongest medications available in my country. Doctors told me we were already at the limit of what was medically possible. I had to live with the hope that medicine would move forward and that new treatments would eventually appear.
I’ve always known that living with a rare condition is different. Other kids could easily get their medication and see local doctors. For me, everything was more complicated, and there was always some obstacle.
Have things like where you live affected the care you were able to get?
Yes, definitely. Years ago, some cholesterol medications weren’t available in Poland, and there were no specialists where I lived. For many years, I had to travel more than 300 kilometres to the capital to receive treatment.
Access to procedures like apheresis was also very limited, and even today it’s only available in a few larger cities.
A lot of it was about searching on our own: reaching out to doctors, foundations, and people who had experience. Someone would help bring medications from abroad, someone else would connect us with the right specialist. It was about constantly looking and building connections.
I’m hopeful because I’ve seen how quickly medicine can move forward. Through joint efforts, we can get treatments to the people who need them.
How did support make a difference for you?
The community around you matters a lot. It’s very hard to keep searching for information and new therapies on your own.
My parents were incredibly committed to protecting my health, and the support from friends and foundations was priceless. Without it, we wouldn’t have made it.
Do you have a message for other patients?
If you ever feel like the situation is hopeless, try not to face it alone. Look for support: a friend, a doctor, a foundation.
The more of us who speak up and show that we’re here, the greater the chance that someone will listen. Even if a disease is rare, the number of people affected is large enough to deserve attention and real action.
Let yourself be seen. There may be someone nearby going through the same thing, and together you can learn more and do more.
Anything you would like to say to policy and decision-makers?
From a patient’s perspective, stability and predictability in access to care are crucial. Living with a rare disease already requires a lot of energy, and complicated or inconsistent access to treatment only adds more stress.
A coordinated system and clear treatment pathway would make a huge difference. Too often, patients have to connect the dots themselves, between specialists, tests, and administrative processes.
It’s also important to involve patients and patient organisations when designing solutions. There are already models to learn from, but what matters most is turning these ideas into real solutions that work in everyday healthcare.
Watch this video to hear Joanna share her journey living with HoFH