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.

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 requires at least half of the Board Members are 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.


 ECPC's Board


  

Kathi Apostolidis 
President
Hellenic Cancer Federation- ELL.O.K. - Greece

Kathi is the President of the European Cancer Patient Coalition for the mandate 2019-2022. She has previously served from 2013 to 2019 as ECPC Vice President in close collaboration with the Past President, Prof. Francesco de Lorenzo.  Kathi was involved with ECPC since its early days as ECPC member representative.

Kathi represents ECPC at:

  • the EMA's Patients and Consumers Working Group;
  • the Steering Committee of the ENCePP/EMA
  • the Expert Group ECIBC/QASDG EU Initiative on Breast Cancer;
  • the Steering Committee of HTAi's Patients and Citizens Involvement Group;
  • the eSMART Project as Project Advisor;
  • the Scientific Advisory Board of TRANSCAN II.
  • The WPCC-World Pancreatic Cancer Coalition Steering Committee

as well as on other European Commission Experts Committees.

Kathi is a Public Affairs Consultant with broad and diversified experience in regulatory and public affairs, trade diplomacy, strategy, marketing and communications.

Surviving breast cancer twice, she was involved in breast cancer, survivorship and cancer patient rights advocacy on the national and international level. 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, and digital technology in cancer care.

At the national level she is a founding member and President of the Hellenic Cancer Coalition-ELLOK (ellok.org) and a Director/Board Member of other Greek cancer patient associations. She represents patients at the Board of Directors of the recently legalized and under establishment National Cancer Institute and in  the Patient Registries Committee of the Greek Ministry of Health.

Kathi is an active user of social media in healthcare:

Twitter:@kgapo, FB: Kathi Apostolidis - #opnhealth, Blog: http://epatientgr.wordpress.com, Pinterest: kgapo


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Pietro Presti 
Vice President

Fondo Edo Tempia Association 

Born in Turin, Italy, Pietro Presti is a dynamic and goal-oriented manager with a broad experience in the healthcare sector, especially in oncology, including prevention, screening, advocacy, cancer control and research. With a master’s degree in law and MBA, he is currently General Secretary at "Fondo Edo Tempia”, an Italian private association primarily involved in cancer prevention and advocacy, palliative care, psycho-oncology and support to the public health-care system. He is also Managing Director at “Edo ed Elvo Tempia Foundation”, a private foundation operating in the field of oncological prevention, diagnosis and research. He possesses an excellent track record of managing and scaling complex and innovative projects and public-private partnerships. As a volunteer, he serves as board member at international and national associations and organisations in cancer advocacy, education and research. He has spoken at several international and national conferences, lectures at Master’s level at the University of Turin, is a team member of the European BenchCan project (www.oeci.eu/Benchcan/), and has participated in a Solitary Everest Base Camp Trek for Philanthropic Fundraising Challenge to donate a DigniCap device to the hospital of Biella.


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Jacqueline Daly
Secretary

East Galway and Midlands Cancer Support Centre

Jacqueline is the Director of Services at East Galway and Midlands Cancer Support Centre in Ballinasloe, Co. Galway, Ireland, co-founded in 2012. She is a contributor to ECPC and has worked on their publication 'Living Well During Cancer Treatment' and has written the Structured Education Programme to Support Men with Prostate Cancer (STEP). Married to Mike, with one son Seamus, she herself is a Cancer Survivor and Complimentary Therapist. 


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Beata Ambroziewicz
Treasurer

Polish Union of Patient Organisations

Beata is the President of the Polish Union of Patient Organisations "Citizens for Health",  Board Member of Polish Cancer Patient Coalition, President of Let's Win Health Foundation, Member of National Development Council & National Health Council in Poland, Deputy Editor-in-Chief of Cancer Patient Voice Magazine and Member of the Steering Committee for Coordination of EFSI intervention in the health sector. She graduated from the University of Warsaw and for over 10 years has represented patient organisations. Actively cooperating with non-governmental organizations, PAGs, she has representated  health-related institutions, Ministry of Health, National Health Found, Patient Rights Ombudsman and many others. She coordinates the implementation of nationwide projects financed from EU and Norwegian funds such as: "Citizens for Health", "Civil Agreement for Oncology" or "Social monitoring of implementation of oncology package by Ministry of Health. Beata organises and participates in many national and international conferences, symposia, and trainings on health and patient empowerment. She promotes the constitutional principles of subsidiarity, social dialogue and cooperation, openness, solidarity and mutual support for unions, associations, federations, foundations and other patient organisations.


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Maude Andersson
Board Member

Swedish Gynaecological Cancer Patients National Coalition (GYNSAM) 

Maude is a board member of the European Cancer Patient coalition and the Vice-President of Gynsam (Swedish Gynaecological Cancer Patients National Coalition). Her first personal encounter with cancer was in 1984, when a lump was discovered in her left breast and removed. In 1999 she was diagnosed with ovarian cancer and had surgery, radiation and had brachytherapy. She previously worked as an engineer for Ericsson and at the Department of Physics and Electrical Engineering at the University of Karlstad. She is currently a patient representative in the Regional Cancer Centers in Sweden – the Gynecological Cancer Group, the Palliative Group, the Contact Nurse Group, Patient and Associate Group, and the Rehabilitation Group. She is also a member of the Disability Board in the County Council in Värmland, Editor of Gynsamposten (the journal of the Swedish Gynaecological Cancer Patients National Coalition) and President of GCF Musslan (a patient association for women with gynaecological cancer living in the west of middle Sweden). She works to ensure that all people have access to the latest and best care available, preventive measures such as health checks and screening are implemented, and all patients are offered rehabilitation. In Sweden, she has launched a network for young women with a cancer diagnosis, coordinated a project to support immigrant women with cancer, and lobbied the national government for better health care and HPV vaccination. As a board member of the European Cancer Patient Coalition, she is working on rare cancer issues, HPV vaccination for boys, writing a book about cancer side-effects, as well as continueing to work with Nordic Sister Organisations.


 Robert Greene
Robert Greene

Board Member
HungerNdThirst Foundation

Robert Greene is the Founder and President of HungerNdThirst Foundation, a foundation which focuses on the management of dysgeusia through awareness, research, education and product development. He is a Patient Advocate for Inspire2Live, an Ambassador for Imerman Angels and ‘professional patient’. Former healthcare professional he was diagnosed and treated for colon cancer in 2012 and diagnosed and treated for prostate cancer in 2018. He advocates for a more patient centered and patient centric approach in clinical trials. Dedicated to creating awareness for taste alteration caused by cancer treatment and its impact on quality of life, he believes that the nutritional status of patients should be a focus point upon receiving a cancer diagnosis, and that health care professionals should never lose sight of the emotional and social aspect of food. A strong believer that collaboration is key when addressing issues faced by patients diagnosed with cancer.
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Vasile Ianovici 
Board Member

Association of Patients with Myeloproliferative Neoplasies MIELOPRO

Vasile is a patient diagnosed with chronic myelogenous leukemia about 15 years ago, at this time in molecular remission and still under treatment with imatinib. After diagnosis he started fighting the disease and managed to cope with all the challenges in his life; he continued to work in the company where he was employed for over 20 years, having previously been a naval mechanic for 8 years. With vast management, marketing, and public relations experience, he decided to get involved and try to do more for the patients like himself, diagnosed with oncological diseases. Thus, in 2013 he was co-opted in the board of Suceava Cancer Patients Association and censor of the Romanian Federation of Cancer Associations. From 2015 he became a co-founder and vice-president of the Association of Patients with Myeloproliferative Neoplasies MIELOPRO, which is a full member association of Romanian Federation of Cancer Associations, of CML Advocates and ECPC. In parallel daily work at his job, he has contributed to the organisation and deployment of many support, promotional and educational activities for cancer patients within the MIELOPRO Association.

 


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.

 

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Constantine N. Nicolaides 
Audit Committee Chair - Greece 

Following his graduation from Pancyprian Gymnasium he served his military service at the National Guard in the Law Firm of the Commander of the anti-aircraft Artillery as the Artillery’s cryptographer and was the officer in charge of the camp’s education and training and the Artillery’s 2nd office. He studied law at the Universities of London and Wolverhampton and obtained appropriate degrees with honours. He followed a postgraduate course for the Barrister-at-law of the Council of Legal Education in London and is a member of the Middle Temple Inn of Court. He lived in England for many years and worked in various departments of the British Government, such as the Department of the Environment as a legal liaison officer and the Crown Prosecution Service as a legal officer. As from November 1996 he has been practicing law with his own office in Nicosia and at the same time has been acting as a consultant to the Government of Cyprus Attorney General’s office in difficult or complicated criminal cases. He is married to Nedhi and has two children: Annita a law graduate and Solicitor, currently working as an inhouse lawyer for a group of companies in London and Nicholas, a law graduate and Barrister who works with his father at their law firm.


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James Caldwell
Audit Committee Member - Northern Ireland 

James is a rare cancer patient, diagnosed in 2014 with mucinous a adenocarcinoma of the appendix. In 2014 he had major surgery followed by systemic chemotherapy. He is a member of the ECPC working group on rare cancers and has attended a number of patient advocacy events throughout Europe. He is a trustee of a local charity, “The Northern Ireland Rare Disease Partnership” (NIRDP) as well as taking the role of treasurer. While NIRDP is an umbrella group for all rare diseases, his particular interest is rare cancer. They advocate for patients and their carers on many levels – the Department of Health, the Public Health Agency, hospital trusts, general practice and lobby local MP’s on rare disease related issues, raising awareness and improving the care and support for rare disease patients and their families. They also advocate for patient involvement in all health care planning and decision making. He is quite active on a number of social media groups who provide advice and support for appendix cancer patients and those with PMP (Pseudomyxoma Peritonei). By profession, he is a Chartered Accountant (Chartered Accountants Ireland), a Registered Auditor, and a Registered Nurse. 


 

ECPC Roberto Persio
 
Roberto Persio 
Audit Committee Member - Italy

Roberto is a programme manager working on infrastructure mega projects for a global infrastructure player in Italy, dealing with the design, appraisal and delivery process, with an eye on sustainability, resilience and innovation. Civil engineer, he is currently enrolled as part time student in the MSc course in Major Programme Management at University of Oxford. Since his fight with a rare cancer beginning 2009, he has dedicated his time and energy with progressively increasing commitment and responsibility to AILAR, an Italian charity that supports oncological patients in their therapeutic journey and advocates for their quality of life, firstly as a member, then serving in the national board of directors (since 2011), and as president of the Rome and Lazio regional chapter (since 2015). Together with other AILAR volunteers, he is committed to improve care for oncological patients. With AILAR, he joined forces to promote awareness campaigns (World Cancer day, Make Sense Campaign), screenings (with AIOCC). Roberto is amongst those cancer patient organisation representatives that in 2016 founded FAVO Lazio, the regional chapter of FAVO, led by Silvana Zambrini. ERN EURACAN European Patient Advocate (EPAG) for rare head and neck cancer since October 2018, taking over from his fellow Umberto Tassini. Passionate about life, Roberto is committed to give a voice to those, either young in their ID or in their heart, that are fighting to improve caring conditions for oncological patients, in order to let them focus on their therapeutic journey. He will keep seeking to join forces and strengthen the cancer patient coalition we all represent.


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. Francesco de Lorenzo

ECPC Past President and Scientific Committee Chair

President of the Italian Federation of Volunteered-based Cancer Organizations (F.A.V.O.)

ITALY


Prof. Dr. Louis Denis

Oncology Centre Antwerp (OCA)

BELGIUM


Prof. Neil K. Aaronson

Department of Psychosocial Research, Division of Psychosocial Research & Epidemiology

NETHERLANDS

Prof. Athanasios Dimopoulos

Dean of Athens University, EKPA

GREECE

Prof. Mark Lawler

Queen's University Belfast

NORTHERN IRELAND

Prof. Francesco Perrone

Istituto Nazionale Tumori di Napoli

National Cancer Institute of Naples "G. Pascale"

ITALY