Vision & Partnerships
What makes ECPC the largest
cancer patient organisation in Europe
ECPC works for a Europe of equality, where all European cancer patients have timely and affordable access to the best treatment and care available, throughout their life. ECPC believes that cancer patients are the most important partners in the fight against cancer and against all the cancer-related issues affecting our society. Policy makers, researchers, doctors and industry should recognise cancer patients as co-creators of their own health.
- Empower European cancer patients through the dissemination of fundamental information regarding cancer;
- Foster co-operation among cancer patients’ organisations through joint activities;
- Ensure that state-of-the-art cancer care practices are shared across the EU;
- Make cancer a priority for action on the European health policy agenda;
- Have an active role in shaping European and national healthcare policies that impact on cancer patients;
- Contribute to change or create EU and national laws to satisfy cancer patients' needs;
- Call for research on survivorship issues and advocate for better healthcare and social services for them.
In order to achieve its mission, ECPC divided its activities in 4 major clusters:
Each year, ECPC produces an annual Action Plan, which depicts the specific actions that will be organised, in line with our general strategy. You can find more information on the dedicated Action Plan webpage, clicking below:
Since its creation in 2003, ECPC established a series of partnerships with fundamental stakeholders in order to maximise the impact of ECPC activities.
Joint Actions are initiatives launched by the European Commission, in partnership with several EU Member States which collaborate on voluntary basis. The objective of the Joint Actions is to increase collaboration between the Member States and progress the level of harmonisation. Until now, there have been three Joint Actions on cancer:
- The European Partnership Action Against Cancer (EPAAC), from 2011 to 2014 (ended);
- The Joint Action on Cancer Control (CanCon), from 2014 to 2017 (ongoing);
- The Joint Action on Rare Cancers, to be launched in 2016.
ECPC is a key partner in all three Joint Actions.
The European Commission created an ad-hoc group of experts in the field of cancer (Expert Group on Cancer Control) to advice and support the Commission in its decision making process. Click here to find more information about the Expert Group.
Lead by the European Commission’s in-house research centre, the Joint Research Centre, the Initiative aims at developing a European Quality Assurance Scheme for breast cancer services, underpinned by accreditation and high quality, evidence-based guidelines. Click here to find out more.
The mandate of the group is to develop guidelines for assessing the validity and reliability of the data that health apps collect and process. ECPC has been selected to represent the voice of cancer patients within this crucial technology and policy topic. Click here to find out more.
ECPC is a member of the Health Policy Forum which meets twice a year in Brussels.
The overarching goal of the EU Health Forum is to contribute to the development and implementation of actions to protect and improve the health of European citizens. In particular, the objectives of the Forum are:
- To provide a communication channel between policy makers and stakeholders on EU health policy issues. The information in this channel should flow in both directions and should also facilitate communication among stakeholders. This requires a strong commitment of Forum members both to ensure dissemination within their networks but also to reach beyond their members in an open and inclusive manner.
- To enable stakeholders to contribute to EU health policies by identifying emerging health issues, proposing policy options or shaping and giving feedback on policy proposals and implementing measures;
- To support delivery of the EU Health Strategy by health advocacy and other appropriate means and tools at EU, national, regional and local levels;
- To enable health actors at national and local level to define EU level work that will support their agenda;
- To define European work packages that are relevant to the broader range of health actors, e.g. youth, lifestyles, workplace, health promotion or HIAP.
The European Medicines Agency, created in 1995, is the agency of the European Union which evaluates new medicines. EMA authorises the commercialisation of all new cancer drugs.
Kathi Apostolidis and Rafal Swierzewski are the ECPC representatives in EMA’s Patients’ and Consumers’ Working Party of the Committee for Medicinal Products for Human Use (CHMP). Their main task is to extend an intensive cooperation between cancer patients and the European Medicines Agency, so that cancer patients are strongly involved in all possible procedures within EMA (e.g. benefit/risk assessment in Scientific Advise procedures; Package Leaflets assessment; participation in Scientific Advisory Group in case of oncology). Patients’ contribution is very important also for Pharmacovigilance e.g. adverse drug reaction reporting as well as pushing national authorities to implement all rules of the Pharmacovigilance Directive.
Union for International Cancer Control (UICC) is a membership organisation that exists to help the global health community accelerate the fight against cancer. Founded in 1933 and based in Geneva, UICC’s growing membership of over 900 organisations across 155 countries, features the world’s major cancer societies, ministries of health, research institutes and patient groups. Together with its members, key partners, the World Health Organization, World Economic Forum and others, UICC is tackling the growing cancer crisis on a global scale. Following a series of meetings between ECPC and UICC leaderships, ECPC was invited to become a UICC Member. Since 2015 ECPC is a Full Member of the Union and kept close ties with the leadership to identify future areas of collaborations between ECPC and UICC in Europe and beyond.
Since 2013 ECPC has established a cooperation with the OECI. Both organisations are interested in finding solutions in order to reduce inequalities in cancer care among Member States. Both Organisations also cooperate in EU research projects. ECPC was glad to have been consulted about the new OECI standards of quality care and designation system and labels. In September 2015 ECPC and OECI signed an official Memorandum of Understanding to seize the longstanding collaboration.
Founded in 1975, the European Society for Medical Oncology (ESMO) is one of the leading European professional organization for medical oncology. It comprises more than 13.000 oncology professionals from 130 countries and it represents a reference point for education and information in the field of oncology. ECPC and ESMO have a long standing history of collaboration. ECPC is represented within the ESMO Patient Advocates Working Group, which is responsible for the optimisation of patient care in Europe and worldwide, the continuous improvement of cancer-specific information and education, the strengthening of patient autonomy and the support of patient rights.
The European CanCer organisation (ECCO) federates some of Europe’s most important professional associations in cancer. ECCO is also in charge of the organisation of the European Cancer Congress. ECPC inputs directly in the design and organisation of the European Cancer Congress Patients’ Track, via the work of ECPC Secretary Jana Pelouchova, who is a member of the ECCO Patient Advisory Committee.
The European Organisation for the Research and Treatment of Cancer (EORTC) is one of the most important academic research institutions in Europe in the field of cancer. The ultimate goal of the EORTC is to improve the standard of cancer treatment through the testing of more effective therapeutic strategies based on drugs, surgery and/or radiotherapy that are already in use. ECPC and EORTC collaborate on several topics on common interest, ranging from policy issues related to cancer to patients’ awareness and empowerment. In 2016, ECPC and EORTC jointly organised second edition of the Cancer Clinical research methodology Course for Patient Advocates.
The European Alliance for Personalised Medicine (EAPM) brings together professional and patient advocacy groups with extensive scientific, clinical, caring and training expertise in Personalised Medicine and diagnostics, as well as leading academic institutions, industry and other expert stakeholders. The alliance is co-chaired by former member of the European Parliament, John Bowis and former EU health commissioner David Byrne. The European Cancer Patient Coalition is a founding member of the Alliance and a key partner in the Alliances’ initiatives.
CDDF' mission is to provide a unique platform to facilitate interactions between all stakeholders (academia, regulatory authorities, policymakers, the pharmaceutical industry and patient advocates) to improve the efficiency of cancer drug development. CDDF greatly contributed to the development of one of ECPC’s most important projects, the Immuno-Oncology Porta, by providing key funding and via the expert opinion of CDDF Chairmain Prof Heinz Zwierzina.
European Cancer Concord
The European Cancer Concord is a unique patient-centered partnership that acts as a catalyst to achieve improved access to an optimal standard of cancer care and research for European citizens. ECPC and ECC collaborated in 2014 to launch the “European Cancer Patient’s Bill of Rights,” a patient charter that will underpin equitable access to an optimal standard of care for Europe’s citizens.
The European Association of Urology (EAU) represents the leading authority within Europe on urological practice, research and education. Its mission is to raise the level of urological care and to facilitate the continued development of urology in Europe and beyond. In 2012, the EAU Patient Information was established with the aim to provide reliable patient information - on a variety of urological diseases - based on the latest scientific evidence, expert recommendations and patient’s needs.
The ECPC and the EAU embarked upon the EAU Patient Information project on Bladder Cancer in 2015. This collaboration is based on patient feedback and is considered an important step in the development of patient information, bringing together two major players responsible for the dissemination of accurate information to cancer patients throughout Europe.