European Cancer Patient Coalition
Short Name: ECPC
The European Cancer Patient Coalition 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. We believe that cancer patients are the most important partners in the fight against cancer and against all the cancer-related issues affecting our society, working hand-in hand with policy makers, researchers, doctors and industry in order to recognize patients as co-creators of their own health
ECPC is the voice of the European cancer patient and represents over 400 patient organizations in 46 countries. Having the ECPC on board would enable your project to engage directly with the patients and their caregivers. Patient organizations are an important stakeholder in research. Due consideration should also be paid to involve patients and take their views into account wherever relevant.
ECPC is physically based next to the European Parliament and the European Commission. It has a meeting room with videoconferencing facilities that can hold up to ten people. ECPC links the project to over 400 patient organizations in 46 countries. Additionally, ECPC has partnerships with CDDF, EAPM, ECC, ECCO, EMA, EORTC, ESMO, OECI, UICC and the WIN Consortium
Other European projects:
- LEGACy [http://legacy-h2020.eu/] H2020, 2018 – 2022
ECPC is leading the Work Package 5 ‘Communication and Dissemination’ of the Latin American and European countries network for precision medicine approach in Gastric Cancer (LEGACy). We are responsible for a full dissemination, exploitation and communication of all project outreach activities, empowering patients and their families by ensuring new insights are effectively communicated, and a final stakeholder event at the completion of the project. Additionally, ECPC will be contributing to Work Package 3 ‘Complex data analysis’ through the designing of a project website with access to the different data collected for the facilitation of communication between various stakeholders, as well as Work Package 4 ‘Translation to clinical practice’ by providing the patient perspective. ECPC is also part of Work Package 6 ‘Coordination and Management’, responsible for the ethical oversight of the project and ensuring patient-centricity.
- BD4BO DO-IT [http://bd4bo.eu/] H2020 IMI, 2017 – 2019
The European Cancer Patient Coalition is collaborating with European expert patient groups to develop informed consent forms, minimum data privacy standards, and supporting materials for the BD4BO overarching projects. Furthermore, ECPC is participating along with other consortium members in the compiling of concise and comprehensive educational material which will provide European patients with the basic knowledge to understand the importance and power of clinical trials, bio banking, and exploratory research such as biomarkers. ECPC is an active member in the projects’ Communications team and has been working closely on overall project branding, communication planning, website development, and out-reach activities and will finally contribute to the successful dissemination of the project’s deliverables.
- BD4BO PIONEER [https://prostate-pioneer.eu/] H2020 IMI
PIONEER is a European Network of Excellence for Big Data in Prostate Cancer. ECPC is collaborating to ensure the dissemination and communication of the project’s aims, objectives and results. Furthermore, PIONEER will leverage strong existing patient networks of consortium partners such as ECPC to ensure that the projects outcomes are effectively communicated to patients in language they can understand thus ensuring patients and their families have equitable access to the best care for them.
- ELBA [https://elba.uni-plovdiv.bg/] H2020, 2018 – 2021
ECPC will take part in the European Liquid Biopsy Academy (ELBA) as a partner organisation. We will contribute to the training courses by offering expertise in patient involvement, as well as advocating the role of patients/co-researchers as the best partnership model between researchers and patients, since it allows patients to contribute with their unique experience to key decisions regarding research projects. ECPC is also on the Project Advisory Board to monitor the project progress and provide input on the design and direction. ECPC will be using its communication channels to share information about the project, its results and its participants. A representative of the ECPC will attend each annual meeting and deliver a presentation on the important role that people with cancer play in research. The ECPC will also participate in workshops on communicating complex research results to a public audience, understanding the patient perspective, and on scientific writing.
- iPAAC [https://www.ipaac.eu/] 3HP, 2018 – 2021
ECPC is part of the Innovative Partnership for Action Against Cancer (iPAAC). ECPC will prepare and organise 2 conference meetings to address representatives for all relevant cancer patient organisations and actively support networking and mapping of contacts with patient organisations. ECPC will contribute to guidelines, which will be delivered after piloting a comprehensive ICT model. Additionally, ECPC will advise on the selection of epidemiological indicators on cancer prevalence and survivorship and disseminate the results. Lastly, ECPC will participate in a consensus meeting to define the definition of neglected cancers using the case for pancreatic cancer and cooperate to carry out an expert workshop.
Role in the project:
ECPC will be provide input on patient’s needs and will involved especially in WP5 and WP6.
Antonella Cardone (Female)- Position in organisation: Director. Antonella Cardone is the Director of the European Cancer Patient Coalition. She has over twenty years of international activity in health, social and employment sectors. Prior to ECPC, Antonella was the Executive Director of the Fit for Work Global Alliance, a multi-stakeholder coalition championing change in health and work policy. She also worked with the European Multiplec Sclerosis Platform, a patient organisation, on the “Ready for Work” project. She was previously Director of the Global Smoke free Partnership of the American Cancer Society, leading a movement of over 100 members among civil society, universities, and ministries of health to coordinate the development of smoke-free laws in 40 countries. Antonella has managed over 40 large EU co- funded projects across all EU member states. She holds a Master’s in Business Administration
Sclerosis Platform, a patient organisation, on the “Ready for Work” project. She was previously Director of the Global Smoke free Partnership of the American Cancer Society, leading a movement of over 100 members among civil society, universities, and ministries of health to coordinate the development of smoke-free laws in 40 countries. Antonella has managed over 40 large EU co- funded projects across all EU member states. She holds a Master’s in Business Administration.
Isabelle Manneh (Female) – Position in organisation: Head of Health and Research Programmes Isabelle is ECPC’s Head of Health & Research Programmes and is the appointed executive body for our research activities from industry to EU funded projects participating in several European Union’s Research and Innovation framework programmes in addition to working on 3 principal EU Policy files: the European Cross Border Health Directive, the General Data Protection Regulation, and Health Technology Assessment. She is a registered Pharmacist (RPh) and certified Public Health Professional (CPH) holding a post-master’s degree in European Studies specialising in EU Policy & Project Management. Isabelle is a USAID Training Future Leaders Scholarship recipient, a Golden Key International Honour Society member, and a EUPATI Scholar who has dedicated the past 10 years of her life to patients. She has previously worked with the United Nations (UN) and the European Civil Protection and Humanitarian Aid Operations (ECHO), among others around the globe. Isabelle is an active member of the General Assembly of the Worldwide Innovative Networking in personalized cancer medicine (WIN) Consortium, Belgian Health Care Knowledge Centre (KCE) Trials Panel, the European Society of Medical Oncology (ESMO), the European Commission’s Health Technology Assessment (HTA) Stakeholder Pool, Health Technology Assessment International (HTAi), the BBMRI-ERIC Stakeholder Forum, and the Working Party on Nutrition and Health, and is also an elected representative of the European Patient Advocacy Group (ePAG) for the European Reference Network (ERN) on rare adult solid tumours & the ERN Patient Board.
Max Schravendeel (Male) – Position in organisation: Health & Research Officer
Max Schravendeel is the Health and Research Officer at the European Cancer Patient Coalition. He graduated from the in Holland University of Applied Sciences with a Bachelor of Science in Medical Imaging and Radiation Therapy. This was followed by a Master of Science in Governance and Leadership in European Public Health at Maastricht University, and an internship at the European Health Forum Gastein in Austria. During his studies he has supported people with cancer across the fields of radiology, radiotherapy, and nuclear medicine.
Clémence Morinière (Female) – Position in organisation: Partnerships and Communication Manager. Clémence Morinière is ECPC’s Partnerships and Communication Manager. Her professional experience includes communication strategies and off-line/online campaigns aimed at raising visibility and awareness, conveying messages to convince influencers, decision-makers, donors, the media and the general public to commit, to donate or to change their mind-set. For more than ten years she has been working in communications applied to EU affairs and social fields (health, inclusion, poverty, education). She has been involved in projects with European institutions, civil society organisations and citizens with the aim of improving their mutual understanding. Her ambition is to create strong messages and forge creative concepts that will catch one’s attention and have a real impact. Today she aims at empowering ECPC Members, ensuring cooperation at EU level, raising awareness and promoting effective campaigns intending for a good life for all based on health, security, equality and education. She holds a master’s in Communications and European Affairs and a master’s degree in Information and Communication Trades. She has previously worked with Médecins du Monde and in communication consultancies.
Alex Filicevas (Male) – Position in organisation: Head of EU Affairs. Alex is the Head of EU Affairs at the European Cancer Patient Coalition. In his role, Alex leads on ECPC advocacy activities and policy initiatives. He does so by drawing on his comprehensive knowledge of the EU health policy landscape and his experience of having worked on several award winning public affairs campaigns, with a strong focus on policymaker and Member State stakeholder engagement. He has supported a number of private and non-governmental organisations in successful advocacy efforts at the EU level on a range of disease areas and issue-specific public health challenges. Alex owes his inspiration for bettering public health in Europe to the Commissioner Vytenis Andriukaitis. Next to gaining working experience in the Cabinet of the Commissioner, he also developed an in-depth understanding of interinstitutional relations and EU policy making, and manifested his passion for healthcare. He has also worked in public relations and public affairs agencies in London and China before moving to Brussels. He holds a bachelor’s degree in Public Relations from the University of Westminster, London and a Master’s degree in International Communication from the Communication University of China, Beijing.
Main publications and patents:
Lorenzo, F., & Apostolidis, K. (2019). The European Cancer Patient Coalition and its central role in connecting stakeholders to advance patient‐centric solutions in the mission on cancer. Molecular Oncology. doi: 10.1002/1878-0261.12448
Lagergren, P., Schandl, A., Aaronson, N. K., Adami, H. O., de Lorenzo, F., Denis, L., … & European Academy of Cancer Sciences. (2018). Cancer survivorship: an integral part of Europe’s research agenda. Molecular oncology. doi; 10.1002/1878-0261.12428
Makaroff, L., De Lorenzo, F., Apostolidis, K., Pelouchova, J., Winterbottom, A., Chrostowski, S., … & Baker, L. (2017). The European Cancer Patient Coalition’s white policy paper on the value of innovation in oncology. Annals of Oncology, 28 (suppl_5). doi; 10.1093/annonc/mdx385
de Lorenzo, F., Wait, S., Karaca, B., Britten, C. M., van den Bulcke, M., & The European Expert Group on Immuno-Oncology. (2015). Greater patient access to immuno-oncology therapies—what can policymakers do?. ecancermedicalscience, editorial 48. doi; 10.3332/ecancer.2015.ed48
Ciardiello F., et al. (2015). RAS Biomarker Testing: Improving Patient Outcomes in Metastatic Colorectal Cancer. http://ecpc.org/Documents/Policy&Advocacy/ECPC%20initiaitves/White%20Paper_Metasta tic%20Colorectal%20Cancer.pdf