Board & Audit
The European Cancer Patient Coalition is governed by a Board of seven individuals elected by ECPC General Assembly among its Members. The Board is responsible for the strategic direction of the organisation, while the Secretariat is responsible for the day-to-day operations, in compliance with the Audit Committee.
In particular, the Board’s key responsibilities are:
- To establish ECPC Strategy to achieve ECPC's Vision and Mission;
- To provide input to ECPC activities;
- To monitor ECPC activities;
- To protect ECPC assets, providing proper financial oversight and ensuring adequate financial resources;
- To ensure legal and ethical integrity of the organisation;
- To enhance the organization’s public standing
The Board meets at least four times per year.
Each Board member can serve on the Board for a maximum of three consecutive terms (nine years in total).
The ECPC Statute require at least one half of the Board Members shall be cancer patients or cancer survivors.
The ECPC Board elected for the period of 2016 - 2019 has been officially endorsed and published in the Belgian Gazette.
Francesco De Lorenzo
Prof. De Lorenzo is a colon cancer survivor, medical doctor and professor of biochemistry at the University Federico II Naples. He has a rich experience in cancer advocacy, being the co-founder, former Vice-President and the current President of the European Cancer Patient Coalition (ECPC). He is also the founder and President of the Italian Association of Cancer Patients (AIMaC), Italy's first Cancer Information Service (CIS), and of the Italian Federation of Cancer Patients Organisations (FAVO). Prof. De Lorenzo is also active in Italy's governmental network of cancer Institutes (ACC), Italy's National Cancer Plan Committee and National Volunteer Observatory of the Italian Welfare Ministry. Prof. De Lorenzo was also engaged in Italian politics as a Member of Parliament (1983-1994), holding several ministerial mandates (Ministry of Health, 1989-199).
At the Europe and international level, Prof. De Lorenzo is:
- Member of the European Commission Expert Group on Cancer Control;
- ECPC representative within CanCon, in several Work Packages;
- ECPC representative within the EU Joint Action on Rare Cancers, in several Work Packages;
- Founding Member of the Elite Oncology Roundtable, created under the auspices of the Society for Translational Oncology - STO, from which the European Cancer Patients' Bill of Rights originated;
- Co-chair of ECPC Expert Group on Immuno-Oncology;
- Member of the General Assembly of the Worldwide Innovative Networking (WIN) Consortium;
- Member of the Patient Advisory Group of the IMI PREFER project;
- Member of the Science Policy Committee of the European Academy of Cancer Sciences.
Kathi is the Vice President of ECPC-European Cancer Patient Coalition and the President of the Executive Committee of ELL.O.K., the Hellenic Cancer Federation/Greece. Kathi is a Public Affairs Consultant with broad and diversified experience in regulatory and public affairs, diplomacy, strategy, marketing and communications with international companies and public service. Jointly with the President, she is responsible for strategy, strategic alliances, relations with the European Commission and other EU and national high level cancer stakeholders.
Kathi represents ECPC at:
- the EMA's Patients and Consumers Working Group;
- the European Commision Expert Group on Cancer Control together with ECPC President;
- the Expert Group ECIBC/QASDG EU Initiative on Breast Cancer;
- the European Commission Working Group on mHealth Assessment Guidelines;
- Work Packages of the EU Joint Action on Cancer Control;
- Cancer Patients Working Group within ESMO;
- Steering Committee of the HTAi's Patients and Citizens Involvement Group;
- eSMART Project as Project Lead;
- Scientific Advisory Board of TRANSCAN II.
As a twice breast cancer survivor, Kathi was involved in breast cancer, survivorship and cancer patient rights advocacy for the last 25 years. Her advocacy covers issues of access to cancer care, informed shared decision making in cancer care, patient involvement in cancer research, health and cancer care policy and economics, cancer care delivery, patient safety, health technology assessment, digital technology in cancer care. At national level she serves as Board Member at KEFI Association of Cancer Patients, Volunteers and Physicians in Greece and as Director/ Member of other Greek cancer patient associations.Kathi is an active user of social media in healthcare:
Twitter:@kgapo, FB: Kathi Apostolidis - #opnhealth, Blog: http://epatientgr.wordpress.com, Pinterest: kgapo.
Jana is a chronic myeloid leukemia patient on treatment for 14 years. Challenges of living with CML led her, in 2006, to become the founder and chairperson of Diagnoza CML patient organisation in Czech Republic, evolving in 2014 into Diagnoza Leukemie patient society, addressing patients with all types of leukemias. The need for sharing and learning experiences in advocacy was the reason she became the co-founder of the CML Advocates Network (2007) and president of the Swiss-based Leukaemia Patient Advocates Foundation. Recently, she became a member of the Steering Committee of the newly established global network CLL AN (chronic lymphocytic leukemia). Jana is an ECPC Board Member and Secretary since 2011. As a rare cancer advocate she also represents ECPC in the Rare Cancers Europe. For a second election period she is a member of the ECCO PAC. Besides gaining access to therapies in hemato-oncology she is focused on improving methods of patient education and adherence to oral anti-cancer drugs.
Andrew was diagnosed with a Stage 4 bladder cancer in 2009 and almost immediately after major surgery, set up the UK charity Fight Bladder Cancer as the first patient advocacy group in the UK for bladder cancer patients and their families. The charity, under Andrew's direction, has grown to be a significant voice for bladder cancer across the UK and more recently across Europe, where he has helped to draft the recent Bladder Cancer White paper that has been launched in April 2016. Andrew is also a representative of the UK National Cancer Institute's Bladder Cancer Clinical Studies group and two specialist sub groups for invasive and non-invasive bladder cancer. In addition, he has also been the patient specialist representative on the NICE panel developing the latest UK Bladder Cancer Quality Standards and a patient advisor to the Scottish Medicines Coalition.
Matti Järvinen is a lymphoma patient, now five years in remission. He is a board member in the Association of Cancer Patients in Finland. He made his professional career as the managing director of the Finnish Central Organisation for road safety prevention and education. He has wide national and international experience in communication, strategic planning, administration and advocacy. As a new Board member of ECPC Matti wants to strengthen the communication with members and bring Nordic approaches to it. He is in favour of practical, concrete and innovative solutions which are based on good knowledge of local circumstances and challenges.
Dan Cimpoeru is a doctor in Law and author of several scientific works and articles, including the book "MALPRACTICE", a reference work in the Romanian publishing environment. As a lawyer, he has participated in the patient advocacy movement since 2007. He has worked with the Association of Cancer Patients from Romania and umbrella organizations, such as FABC and the Romanian Chronic Patients Alliance. From this position, he has represented the associations in front of the health authorities on various legal matters.
At the same time, he has been deeply involved in defending patients' rights in court. In 2014-2015, based on the European Directive 89/105/EEC, he won 17 lawsuits against the Romanian government and now a number of 165 cancer patients are receiving medical treatment for free. As a consequence, the legislation was finally changed and, since October 2015, these medicines have been covered by the national health insurance system for all Romanian cancer patients. Dan is also a legal consultant and expert of the World Health Organization (WHO).
Chairman and Board Member of Europa Uomo European coalition
Secretary of the Prostrate Cancer Support Federation – Tackle Prostrate Cancer UK
Chairman of APPLE (Charity No 1086824) UK Local support group UK
Ken Mastris is a prostate cancer patient and patient-advocate, committed to promote patients' equality in cancer treatment and better quality of life for cancer patients, in the UK and in all Europe. He is dedicated to patient-advocacy and he aims at ensuring that cancer patients receive the right treatment at the right time, without suffering any additional stress during the complex medical procedures. He strongly believes in treating each patient as an individual, whose point of view and voice shall be carefully listened by health professionals. Ken is also involved in educating men to recognise symptoms and signals of prostate cancer, in order to maximise the chances of early diagnosis. Before retiring from BT in 2005, Ken worked in management for 43 years: he has been part of the Committee of management of Benenden Healthcare Society Limited and of the Board of Governors of the Hospital, but he has also been Chairman of the Internal Audit Committee and Director of the Friends of Benenden.
ECPC's Audit Committee
In line with ECPC Statute, the Audit Committee is elected by ECPC General Assembly among its Members. The three Audit Committee Members remain in charge for three years. The Audit Committee is responsible to oversee the financial management of ECPC, approving ECPC Budgets.
Audit Commitee Chair - Itlay
Born in Turin, Italy, Pietro Presti is a dynamic and goal-oriented manager with a broad experience in healthcare sector, especially in oncology, including prevention, screening, cancer control and research. Pietro is a Managing Director at "Edo ed Elvo Tempia" Foundation, an Italian private foundation, primarily involved in cancer prevention and screening, palliative care, psycho-oncology and research in oncogenomics. Pietro has also been an active member of Union for International Cancer Control (UICC) since May 2007. He is also CEO at im3D Clinic Scarl, a university spin-off operating in the field of oncological screening and prevention, based on medical imaging technologies dedicated to the early diagnosis and prevention of colorectal cancer and breast cancer. Pietro has a substantial experience in strategic and sustainable business development, international projects and institutional relationships, as well as possess an important track record of managing and scaling complex and innovative projects and public-private partnerships.
Audit Committee Member - Cyprus
Nicolas serves as a General Manager of The Cyprus Association of Cancer Patients and Friends (PASYKAF) since 2010. His values have been to be patient centered, goal oriented, transparent and professional, with the aim to grow the organization and be able to create impact towards achieving best patients' outcomes. Personally, Nicolas has a business background, holding a BA in Management and an MBA in Finance. He has 10 years of experience in the private sector, including two international companies with operations in Cyprus, Greece and the UK. These positions gave Nicolas an opportunity to work in diverse environments, cooperating and communicating with people from all calibre and professional backgrounds. In 2014 he was elected as the General Secretary of the Cyprus Patients Federation, an umbrella organization member of EPF and he has an excellent working relations with colleagues and board members from other European and International Cancer Associations.
Audit Commitee Member - Hungary
He has been a President of the Children Cancer Foundation for over ten years. His commitment, broad experience, as well as economic background and leadership skills have ensured a success and confident future for the organization, where Istvan is responsible for coordinating economic matters, planning budgets, conducting analysis, research and more. Thanks to his expertise, legal knowledge and engagement, Istvan is also a board member of several organizations in Hungary and in the USA.
ECPC's Scientific Committee
In 2016, ECPC nominated for the first time the members of the new Scientific Committee, introduced after the renewal of the statutes in the previous year.
The Scientific Committee, established by the ECPC statutes, is a consultative body to the Board, that consists of three to five expert members. The Scientific Committee is chaired by the ECPC President, and has a mandate that coincides with the Audit Committee.
The ECPC Statute defines the main mission of the Scientific Committee works in Art. 10.5:
"The Scientific Committee is a consultative body to the Board. The Board can consult the Scientific Committee for the development and implementation of scientific activities of the association."
The Scientific Committee oversees the work of the Board related to research projects, information materials and any other activity implying the creation and divulgation of scientific information.
The Scientific Committee was appointed following an established procedure in parallel to the election processes carried out in 2016, when the Board and the Audit Committee were elected. Following the open candidature calls in early 2016, 16 candidatures were announced. The candidates can be found in the Elections Hub page.
After the election, the new Board nominated the members of the Scientific Committee, following the procedures established in the statutes in article 10.
The composition of the new Scientific Committee is the following:
Prof. Neil K. Aaronson
Department of Psychosocial Research, Division of Psychosocial Research & Epidemiology
Prof. Athanasios Dimopoulos
Dean of Athens University, EKPA
Prof. Mark Lawler
Queen's University Belfast
Prof. Francesco Perrone
Istituto Nazionale Tumori di Napoli
National Cancer Institute of Naples "G. Pascale"