The European Cancer Organisation
A story of inclusion
The European Cancer Organisation is the largest multi-professional, multidisciplinary society in Europe dedicated to fighting this ubiquitous disease. As a not-for-profit federation of member organisations, it promotes more efficient, effective, and equitable health policies. It brings together healthcare professionals and patients to advocate for change and to give voice to Europe’s vast cancer community.
This was not always the case.
‘We have undergone significant change over the years. Bit by bit we realised that we needed to work together to find novel solutions and approaches to improve cancer care, and that meant we had to considerably broaden our horizons, our breadth, and our community. I'm grateful this message finally got through and that we rolled up our sleeves and got to work.’
Prof. Martine Piccart, ECCO President (2014–2015)
Where to begin?
For that, you need to travel back to a different time and a different name: the Federation of European Cancer Societies (FECS), founded in 1981, with renowned oncologist and politician Dr Umberto Veronesi as its president.
FECS was an international association of various cancer societies at a time when there was little dialogue among these groups.
The six founding members were:
- the European Association of Cancer Research (EACR)
- the European Oncology Nursing Society (EONS)
- the European Society of Medical Oncology (ESMO)
- the European Society of Surgical Oncology (ESSO)
- the European Society of Therapeutic Radiation and Oncology (ESTRO)
- the European Society for Paediatric Oncology (SIOP Europe)
Affiliate members included the European Society for Blood and Marrow Transplantation, the European Society of Gynecological Oncology, and the European Society of Psychosocial Oncology.
They were doctors, nurses, researchers – exceptional people now talking together in search of better cancer care.
‘I think by creating common ground, it built a foundation or paradigm on which combined structures and policies could develop,’ said Prof. Niall O’Higgins, FECS President (1997–1998). ‘But some changes came slowly.
‘In the area of breast cancer, very early on, I remember there was some discussion about having patients included in our clinical meetings. The idea was met with considerable resistance.
‘Fortunately, over time, saner heads prevailed to say: “We must actively engage with patients and those advocating for them. They understand the problems of breast cancer much more intimately than we do, so we must involve them and welcome them as active participants in their own care”.
‘When I left office, patients were not officially part of FECS, but momentum was clearly building to bring them in.’
During this period, FECS developed an education unit, a communications unit, and the influential Accreditation Council for Oncology in Europe (ACOE), establishing the first detailed standards for cancer conferences and events.
As FECS grew in size and influence, so did its ambitions. By the early 2000s, there were growing calls to expand on various fronts. There was also a movement afoot to change the name of the organisation to reflect its broader mission.
What’s in a name?
FECS found itself restricted by the statutes of its original six founding members. This stymied efforts to add a variety of organisations, from clinical psychologists to – finally, and formally – patient advocacy groups. FECS leadership also recognised the need to engage more effectively with politicians and decision-makers in Brussels.
So, in 2007, FECS was formally dissolved and restructured under new statutes and a new name: the European Cancer Organisation. (Initially written: European CanCer Organisation or ECCO.)
‘Going from FECS to ECCO was not just a name change, it was a fundamental change,’ said Prof. John Smyth, ECCO President (2007–2008). ‘The challenge, as we opened up to other societies, often smaller societies, was creating a sense of fairness – not only in the distribution of revenue from our meetings but in shaping our collective agenda.’
Another challenge was gaining traction with those EU policymakers.
‘There was plenty of lip service,’ said Prof. Smyth. ‘We would go to Brussels and hear: “Of course, cancer is an important issue, and we must help you”. But there was little follow-through and few meaningful changes.’
Gradually, however, ECCO demonstrated how you can open more doors, reach more people, and accelerate more progress by adopting a comprehensive, collaborative approach.
The ECCO ‘tent’ was expanding. No longer was it a society exclusively for medical professionals. It now represented a variety of interests, and it needed to harmonise its approach and message.
Better policies produce better care
Effective cancer policy often means finding more efficient ways to allocate the funds and resources at your disposal. It means asking tough questions: How many MRI scans can you operate? How many beds do you have? How much outpatient facility do you have? What's your pharmacy budget? These are decisions best made with all stakeholders in the room.
ECCO became that room. A forum for dialogue. A trusted voice. And politicians began to listen. ‘Politicians need the support of the public,’ said Prof. Smyth. ‘And the public knows cancer all too well. Elected officials in Brussels could no longer look away.
‘ECCO’s role in this effort was pivotal,’ he said. ‘ECCO was effective at keeping everybody at the table and keeping the dialogue civil and progressive.’
This communication and knowledge transfer was becoming increasingly important just as cancer treatments were becoming increasingly complex.
This required far greater emphasis on genuine multidisciplinary and multi-professional solutions. It impacted how groups worked together and discussed together.
‘We stood for collaboration across disciplines,’ said Prof. Naredi. ‘It was now about the full cancer continuum. So completely different from how ECCO started in 2007.’
The welcome mat was out. Any organisation committed to improving cancer care could join. There was no financial incentive, but within ECCO they could help shape policy objectives across Europe. In the process, the image of the organisation became more and more prominent, and its inclusive approach brought together a wide variety of patient organisations to work as one.
Speaking with one voice
ECCO was now the convening voice of Europe’s diverse cancer community, and this paved the way for broad initiatives. One example was a series of publications, Essential Requirements for Quality Cancer Care, which covered a variety of tumour types. Here, ECCO’s members clearly defined what every cancer patient in Europe had a right to expect.
This new alliance, involving a range of healthcare professional and patient groups, would go on to influence the continent’s most ambitious healthcare initiative yet: Europe’s Beating Cancer Plan. ECCO, now renamed ECO (European Cancer Organisation), played a significant role throughout – from the plan’s design to its implementation and beyond.
During the 2020 consultation phase, for example, ECO submitted 12 key recommendations. These included:
– enhanced survivorship support – more workforce education – greater health literacy
– integration of primary care – reduction of inequalities – improved health data use;
– better prevention and early detection – expanded access to treatment
‘This was critical,’ said Dr Matti Aapro, ECO President (2020–2021). ‘We conducted months of in-depth consultation with constituencies throughout Europe’s cancer community. This enabled us to prioritise the specific objectives that mattered most to them – and to convey those priorities clearly to EU policymakers. We were also lucky that the EU Commissioner for Health and Food Safety, Stella Kyriakides, was very familiar with ECO. She had been the first patient representative on our board.’
In addition, ECO convened the European Cancer Summit 2020, fostering high-level discussion among policymakers, healthcare professionals, and patient advocates to further shape the plan’s priorities and implementation.
‘Policymakers recognised they needed clarity,’ said Dr Aapro. ‘Where should the money go? What would have the greatest impact? Politicians did not want to hear from 50 competing organisations. They needed one clear voice, and ECO became their reliable partner.’
Putting the plan into action
When Europe’s Beating Cancer Plan was officially launched in February 2021, ECO expressed strong support for its ambitious goals, which now included a tobacco-free generation by 2040, eliminating HPV-associated cancers, and ensuring comprehensive cancer screening. As ECO’s presidency rotated to Prof. Andreas Charalambous (2022–2023) and then to Prof. Csaba Dégi (2024–2025), ECO continued collaborating closely with the Health Commissioner to find new and better ways to implement this vast new effort.
‘If you don’t have ECO, everything becomes fragmented, and politicians are overwhelmed by the competing messages,’ said Prof. Dégi. ‘With ECO, they came to value our ability to condense expert input into coherent, prioritised proposals.’
When policymakers wanted to address HPV in Europe, for instance, they turned to ECO to assemble the right team of experts. ‘ECO ensured there was consensus coming out of those meetings,’ said Prof. Dégi. ‘It became a competence pool – a trusted filter.
‘We’re the only organisation with all stakeholders represented, which gives us real weight with politicians. We can say, “The entire oncology community is behind this proposal”. That’s powerful. It shows we’re united, we’re well organised, and we’ve taken the time to work through our differences before coming to the table.’
Within just a few years, ECO was acting not only as a policy advisor but also as a direct implementor of the plan, leading several different projects.
Today, ECO continues its focused pursuit of better cancer care while ensuring this issue remains high on Europe’s political agenda.
The European Cancer Organisation cannot solve the problems, but it can be a clearinghouse for ideas that could.
