Authors:

Bettina Borisch

Susan Knox

Marzia Zambon

Abstract

This case study explores the development and impact of EUROPA DONNA – The European Breast Cancer Coalition (ED), the first pan-European patient advocacy organization. Founded in 1994, ED emerged from a need to unify and empower breast cancer patients across Europe amid widespread stigma, disparities in care, and lack of patient representation. With early support from the European School of Oncology and leaders like Gloria Freilich and Prof. Umberto Veronesi, ED rapidly grew from 12 to 26 and now counts 47 member countries. It established legitimacy through its involvement in key EU health policy developments, the launch of its annual Advocacy Training Course, and participation in high-level research initiatives. ED’s strategic partnerships with medical experts and EU institutions enabled it to influence resolutions, shape screening guidelines, and promote equitable access to information and care. The organisation also expanded its scope to include metastatic breast cancer and male breast cancer, and, following the COVID-19 pandemic, adapted to a faster digital communication pace and outreach through social media channels, webinars and online roundtables, and digital platforms such as the newly launched EmpowerED education hub. Through education, legislative advocacy, and collaboration, ED redefined the central role of patients in shaping effective and responsive healthcare systems and policies. Its success has inspired similar advocacy groups and reinforced the importance of patient-led change. Ultimately, ED demonstrates that informed, empowered patients are essential to advancing equitable, evidence-based healthcare across Europe.

Introduction

EUROPA DONNA – The European Breast Cancer Coalition (ED) stands out as the first European patient advocacy organisation. Before 1994, a few national breast cancer organisations existed in individual European countries (such as Sweden, the UK, and the Netherlands), but none represented all the women of Europe.

A Case Study in Patient-Led Transformation of Breast Cancer Advocacy

When Prof. Umberto Veronesi [https://www.oncopedia.wiki/key-players/umberto-veronesi], an Italian oncologist, surgeon, and politician, internationally renowned for his contributions to prevention and treatment of breast cancer, asked British activist Gloria Freilich to set up a European breast cancer coalition, his intention was to follow the example of the American National Breast Cancer Coalition that in the early 1990s had received funding from the U.S. Defence Department to further breast cancer research.

However, this would not become a model for the European version for various reasons, starting from the fact that Europe consists of many countries with diverse languages, cultures and different national health systems. Gloria insisted from the outset that ED needed to be set up by women as an independent organisation representing women’s needs and rights for services concerning breast cancer, an early expression of what would become a long-term commitment to patient empowerment. Therefore, a small group of women leaders was convened and a constitution outlining the coalition’s 10 goals, thus forming the basis of a platform for what ED would support and advocate for in the following years.

With the help of European School of Oncology, ED’s first step in 1998 was to hire a chief executive and set up a head office to represent the member countries, as this would be key to establishing credibility and gaining sponsors and grants from the European Union (EU). The newly established organisation sought to find member groups from all the EU countries and those that were part of the WHO European region so that ED would truly represent all women and all breast cancer patients of Europe. The CEO and the Board President attended all oncology meetings asking specialists to suggest patients or small grassroots groups in their countries who might want to join the coalition.

Many medical professionals were sceptical and viewed an international breast cancer patient organisation as completely absurd and unnecessary. They did not see this effort as likely to result in anything concrete or important. The stigma surrounding breast cancer still caused many women to hide their diagnoses out of fear of professional and personal repercussions. The disease was rarely discussed openly, and conversations about it were often cloaked in euphemism or silence. This culture of secrecy left many feeling isolated.

All of this was about to change: EUROPA DONNA emerged as a movement whose time had clearly come.

From 12 founding countries, the coalition grew to 26 by 2005 and counts 47 member countries today. Many endeavours converged at once to solidify ED as Europe’s breast cancer Advocacy Organisation. As the patient advocate partner of the European Breast Cancer Conference (EBCC) with European Society of Breast Cancer Specialists EUSOMA and the European Organisation for Research and Treatment of Cancer EORTC, ED was called upon to take the breast cancer issues to the European Parliament in the Florence statement of 1998. Various calls were made to members of the Commission and, finally, breast cancer survivors within the Parliament were found who were eager to help bring the breast cancer issues and facts before the Parliament. Speaking to a plenary session was not allowed, but ED was invited to provide the first presentation to members of the Parliament at a reception held at the Parliament in 2000. This would be the first time a patient group representing a disease category had done this.

The EU Health commissioner dropped in to see what this patient group was seeking, as patient representation and advocacy were entirely new and progressive concepts. Soon afterwards, members interested in breast cancer set up the parliamentary group on breast cancer with ED acting as their secretariat. This group, working with ED, developed a draft of the 2003 resolution, and ED helped to canvas parliamentarians and ask their country members to vote in favour of its passage. Research fact sheets and detailed posters with evidence-based information were developed by ED and presented to parliamentarians over the five-day period before the vote at the Parliament.

This resulted in the passage of the first resolution in 2003 followed closely by another in 2006 and then by declarations of 2010 and 2015. In its 2003 and 2006 resolutions, the European Parliament made significant strides in prioritizing breast cancer as a public health issue across the EU. The 2003 resolution called for national breast cancer screening programmes to be established in all member states, ensuring access to high-quality care, early detection, and specialized treatment. It emphasized reducing disparities in outcomes and encouraged the development of national cancer plans. Building on this, the 2006 resolution further stressed the implementation of multidisciplinary breast units by 2016 and called for increased funding for research, patient support, and awareness campaigns. In 2015, the European Parliament reinforced its commitment urging the EU and member states to ensure equal access to specialist breast cancer services, improve data collection, and support initiatives to reduce mortality and improve quality of life for patients across Europe. These initiatives not only shaped health policy but marked a fundamental shift: patients were becoming co-creators of the healthcare system, advocating for informed, person-centred care. And the synergy found with the EU Institutions provided the basis for many of Europa Donna’s advocacy activities for the following years at EU level and in all ED member countries, including those beyond the EU borders.

Also important, at the outset of ED, was the active involvement of advocates who had had the experience of breast cancer themselves. This was key to convincing policy makers, opinion leaders, and sponsors to support our initiatives. The CEO was a survivor, our third President, Stella Kyriakides, was a survivor. Per the ED constitution at least three board members must be breast cancer survivors. Numerous parliamentarians and staff at the European Commission who helped with ED’s first initiatives were also survivors of breast cancer. The power and the voice of patients had arrived.

The lived experience together with a professional interest group representation became critical to shifting the public narrative of breast cancer from secrecy to strength, and from compliance to doctor/patient shared decision-making.

The need for patient educational programmes emerged forcefully during the Europa Donna Pan-European conference held in Paris in 1999, with patients and advocates from over thirty countries in attendance. It became clear that many of those present did not have knowledge of best practices in either screening or treatment of breast cancer. Many had been patients but had not received state-of-the-art surgery or treatment. Many had received unnecessary mastectomies as conservative surgery was not widely performed. In a time when – adding to the language barriers - digital technology, the internet and emails were not so widely accessible, information was slow to reach all ED countries.

Furthermore, advertising of pharmaceutical and medical products was (and is) not permitted in the EU, so patients did not have good information about developments in these areas. These factors made the development of patient advocacy even more crucial at the time. Many medical professionals and scientists wanted the status-quo to continue and were not comfortable with new ideas on treatments to be disseminated to patients. The conference participants completed a questionnaire indicating that education for advocates on evidence-based practice was essential; it quickly became clear that, to be truly effective, ED needed its advocates to be trained to speak with one educated voice on behalf of the patients of Europe.

That realisation led to the launch of perhaps the most important ED programme to date: the European Donna Advocacy Training Course. Held annually since 2001, the Advocacy Training Course has been consistently providing updated, independent, evidence-based information on all topics related to screening and treatment of breast cancer to well over a thousand advocates from across Europe. Nobody was allowed to attend the course twice, so that key information was transmitted to new and different advocates each year, providing them with updated independent evidence-based knowledge to take home and train others in their countries.

Concurrently in 2003 the Council of Europe recommended mammography screening for all women between 50 and 69 every two years in all the member states, but how would this get implemented when each country had control over what health services got provided nationally? Professional and political groups began to see that patient groups could actually play a powerful role in influencing changes at the national level. In addition, the European Commission supported the concept that patient advocate organisations based in EU countries should be partners in projects that received EU funding.

In 2002, ED was invited to be part of the European Breast Cancer Network (EBCN), thus acquiring knowledge about organised mammography screening programmes, information that was immediately included in ED’s basic training for advocates. The EBCN and EUSOMA collaborated on the 4th edition of the European Guidelines on mammography screening and diagnosis issued in 2004. At the time, there was really no mechanism for people to be informed of these important guidelines. ED saw the opportunity to inform women about their rights to receive these services by producing the “Short guide to the EU guidelines”. This publication enabled ED and well-trained national breast cancer advocates to demand services they were entitled to, and to educate policymakers, stakeholders - a crucial step in asserting the right to informed care.

The many professionals involved could see that this was an important collaboration and there was synergy for everyone involved. Experts in the field- scientists, surgeons, radiologists, epidemiologists, pathologists all readily accepted invitations to be speakers, lecturers and educators of ED advocates.

And so, the collaborations continued; working with the IARC, ED launched its first annual prevention campaign backed by research demonstrating the benefits of healthy lifestyles from a young age, Breast Health Day, on October 15, 2008. This reflected a broader understanding of patient autonomy - empowering individuals not just in treatment choices but in becoming empowered and shaping long-term health outcomes.

Building on this trajectory, ED was instrumental in getting the Commission to set up the European Commission Initiative on Breast Cancer (ECIBC). From 2012 to 2015, ED participated in various steps as this project moved from concept to reality. When the ECIBC was launched, the CEO and the deputy CEO of ED were both selected as individuals to represent patients and women on the European Commission’s Guidelines Development Group (GDG) and on the Quality Assurance Scheme Development Group (QASDG) - a recognition that patients belong at the centre of quality and policy frameworks.

The many professionals involved could now see that a patient advocacy organisation such as ED could provide a crucial collaboration and that there was synergy for all stakeholders involved. Experts in the field- scientists, surgeons, radiologists, epidemiologists, pathologists- all readily accepted invitations to be speakers, lecturers and faculty members of educational programmes for ED advocates.

In the same way, when a major breast cancer research project of the Breast International Group (BIG) received funding from the European Commission for the MINDACT TRIAL in 2004, ED was invited to serve on the steering committee, the legal ethics committee and the network of excellence committee. This led to invitations to BIG’s scientific committee meetings and membership on other research committees for AURORA, ISCBG, TRANSBIG, ALTTO, HABITS, HERA, etc. Partnerships were forming everywhere, and ED was now viewed as a powerful patient advocacy organisation and considered an essential partner in these projects and endeavours. What became clear to medical professionals and scientists was that patient advocacy could be powerful in bringing about change and educating both the public and politicians.

These collaborations ensured that the patient voice was present at every stage - from research design to implementation - advancing the principle that patient insights are not anecdotal, but essential data.

ED’s evolution became a blueprint for others. Inspired by its success, other disease-specific groups such as Europa Uomo, Europa Colon, and Alzheimer Europe began to form, with ED readily providing mentorship and advocacy education. Patient-centred governance was no longer theoretical - it had become a movement throughout Europe.

And, as advancements in research and treatment were made extending life expectancy after a breast cancer diagnosis, ED realised that the views and needs of women with metastatic breast cancer (MBC) were not being adequately addressed. In 2016, ED launched its first advocacy training programme specifically focused on the unique challenges faced by people living with MBC, with the aim of informing and empowering MBC advocates.

The COVID-19 pandemic in 2020 was a worldwide turning point, dramatically impacting everyone’s life and profoundly changing social and working interactions with effects well beyond the pandemic. As lockdowns across Europe disrupted in-person meetings and conferences, ED quickly adapted, embracing digital tools to stay connected with its very diverse stakeholder eco-system and to stay in close touch with its member countries. What could have been a period of disconnection instead became a springboard for innovation. Virtual platforms enabled faster outreach, wider participation, and, ultimately, more agile and inclusive engagement with policymakers, healthcare professionals, other patient organisations and ED national organisations.

Out of this necessity came the rise of bimonthly Roundtables - a digital innovation that is now a mainstay of Europa Donna’s work. What started as an emergency tool during COVID has evolved into a highly effective channel for continued education, exchange of best practices, and coalition-wide dialogue. These sessions, often focused on cutting-edge topics like genomics, lymphoedema, sexuality, or MBC, are now regular, well-attended events that keep advocates connected, engaged, and well-informed.

At the same time, Europe’s Beating Cancer Plan, launched by EU Health Commissioner Stella Kyriakides (former ED President), fundamentally reshaped the European health landscape. This ambitious initiative offered a unifying framework of action for cancer care, prevention, and policy development. For breast cancer advocates, it brought renewed hope - and a much-needed spotlight on persistent inequalities in care, services, and access across member states. ED leveraged this political momentum to ensure breast cancer, and particularly metastatic disease, was not overlooked.

This effort culminated in one of Europa Donna’s most impactful and acclaimed initiatives: The Cancer Currency Campaign. Launched in 2023, it gave visibility, dignity, and urgency to the unmet needs of people living with metastatic breast cancer. Through powerful storytelling and the metaphor of personalised banknotes, the campaign brought MBC patients' voices to the highest levels of EU decision-making, securing the first-ever formal inclusion of metastatic cancer in Europe’s Cancer Plan. The campaign continues to resonate across social media and political circles alike. The emotional impact and strategic precision of this campaign earned awards and global recognition, but most importantly, it delivered results: awareness, inclusion, and a promise of funding.

While working together with other European organisations and multistakeholder initiatives such as EPF, WECAN, ECO and Transforming Breast Cancer Together, ED has been steadily building capacity behind the scenes - especially in the world of proactive patient involvement in shaping and developing breast cancer research. The organisation is now deeply embedded in multiple EU-funded projects, often from inception. No longer content with simply endorsing research, ED leads work packages on patient engagement, ensuring that clinical trials reflect real patient priorities and that study protocols integrate quality of life, survivorship, and psychosocial outcomes as key endpoints. This marks a new level of influence and responsibility in shaping the future of breast cancer care.

To support this expanding engagement, Europa Donna is launching EmpowerED, a digital knowledge hub for ED advocates. This modular educational platform provides comprehensive training on everything from risk factors and early detection to policy advocacy and clinical trial design. It is designed to break barriers of geography, language, and access - ensuring that from Lisbon to Lviv, all ED advocates have the tools they need to speak out, advocate effectively, and participate in international programmes with confidence.

The digital shift also laid the groundwork for deeper internal reflection and structural strengthening. In 2024, Europa Donna began an ambitious Fora Mapping project, aimed at better understanding the diverse needs, capacities, and challenges of its 47 national member organisations. This initiative is more than a survey - it’s the foundation for stronger collaboration, smarter resource sharing, and enhanced regional cohesion. It's a move toward a more deeply connected, engaged, and empowered coalition.

While many umbrella organisations have emerged in recent years, few possess ED’s longevity, reach, and genuine grassroots foundation. Representing one of the most diverse health landscapes in the world - spanning cultures, languages, healthcare systems, and socioeconomic realities - ED remains uniquely equipped to translate a unified patient voice into actionable European policy, all while tailoring its support to local contexts.

Over the past decade Europa Donna has increasingly evolved its discourse to include men, recognizing that although rare, male breast cancer is a serious health issue. ED’s Organisational campaigns now work to raise awareness about the risks, symptoms, and support needs unique to men, challenging the stigma that breast cancer is solely a women’s disease. This shift promotes inclusivity and encourages earlier detection and treatment among men. The message seems to be getting through: at the 2025 edition of ED’s Advocacy Training Course one of the participants was a male breast cancer survivor, set on learning the skills to become an advocate for male breast cancer.

Looking ahead, Europa Donna enters its next chapter with renewed strength and clarity. Whether it’s shaping EU health strategies, leading international research projects, empowering national advocates, or giving voice to the overlooked, ED’s mission remains clear: to ensure equal access to reliable independent information on breast cancer and best practice care and support.

Conclusions

Throughout this over 30-year long history of growth, one principle has remained central: empowerment comes through knowledge. From the early introduction of informed consent, to pushing for shared decision-making models, to eliciting the recognition of patient expertise (savoir-patient) in chronic disease management, ED’s advocacy efforts have also helped redefine the doctor-patient relationship. The rising establishment of breast units with multidisciplinary expert teams have validated the demands for these changes and contributed to improved survival and quality of life outcomes across the European continent.

Yet important disparities remain - particularly between high- and low-income countries. These inequities in access, outcomes, and services must be addressed. All Europeans deserve the same level of care, regardless of geography, income, or health system.

Europa Donna’s story shows that evidence-based, politically engaged, patient-led advocacy can reshape not only cancer policy, but the entire healthcare landscape. Patient empowerment - once unthinkable - is now a cornerstone of care. And while there is still much to do, especially in terms of equity and implementation, ED’s path has shown the way: empower the patient, and the system will follow.

References

Breast International Group. (n.d.). https://www.bigagainstbreastcancer.org

Europa Donna. (2023). The Cancer Currency Campaign. https://www.europadonna.org/our-work/cancer-currency-campaign

Europa Donna. (n.d.). Our history. https://www.europadonna.org/about-us/our-history

European Commission. (n.d.). European Commission Initiative on Breast Cancer (ECIBC). https://healthcare-quality.jrc.ec.europa.eu/ecibc

European Parliament. (2003). Resolution on breast cancer in the European Union. https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=CELEX%3A52003IP0190

European Parliament. (2006). Resolution on breast cancer in the enlarged EU. https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=CELEX%3A52006IP0386

European Parliament. (2010). Written Declaration of 22 November 2010 on the fight against breast cancer in the European Union (Written Declaration 0071/2010). Official Journal of the European Union. Retrieved from https://www.europarl.europa.eu

European Parliament. (2015). Written Declaration of 25 November 2015 on the fight against breast cancer in the European Union (Written Declaration 0022/2015). Official Journal of the European Union. Retrieved from https://www.europarl.europa.eu

Other keyplayers: Bettina Borisch, Susan Knox, Marzia Zambon