ECPC Annual Congresses

Each year, the European Cancer Patient Coalition organises an Annual Congress for its Members. See below an overview of all our gatherings since 2006! 

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ECPC Annual Congress and Annual General Meeting (AGM)

Renaissance Hotel, Brussels

ECPC19 Grup photo outside light version

 

Annual Congress Agenda & Speakers' BiosSpeakers' Bios
Board and Audit Committee 2016 - 2019

Newly elected Board and Audit Committee 2019 - 2022 Newly elected Board and Audit Committee 2019 - 2022 
List of Participants
Annual Report 2018
Financial Report 2018
Minutes of the 2019 ECPC AGM
Elections 2019 

Evaluation Form

The European Cancer Patient Coalition Annual Congress and Annual General Meeting
7-9 June 2019 – Renaissance Hotel, Brussels, Belgium

Did you know that Europe comprises only one eighth of the total world population but has around one quarter of the global total of cancer cases with some 3.7 million new patients per year? On 7-9 June, the European Cancer Patient Coalition (ECPC), the largest cancer patients umbrella organisation in Europe, convened stakeholders in Brussels to explore the issue that cancer patients and their carers face in society today and identify possible solutions.

‘’The most important thing is to empower patients to know more about cancer and the opportunities available to them’’ – Francesco de Lorenzo, European Cancer Patient Coalition Past President.

Welcoming partners, patient organisations and health care professionals’, numerous sessions addressed topics presented by experts working in the field. With the shared goal of empowering those who are in the fight against cancer and related issues, the discussions explored the need to communicate the complexities of cancer and its implications in all aspects of life. As stated by Antonella Cardone, Director of ECPC, ‘’it is time to evolve health care to have a more holistic view of the journey that patients and carers go through and enable a better quality of care and support’’. It is also time to understand that cancer is much more than a death sentence and a disease. There are over 100 different types of cancer and they affect mental health, having huge impacts on the quality of life, even for those who have overcome cancer. Survivorship requires a support system that helps make the transition through the different stages of recovery.

‘’Nowadays we are curing a lot of patients. There is a life after cancer, but patients face discrimination and societal issues’’ – Francoise Meunier, Federation of European Academies of Medicine Vice-President.

The question is, what can Europe do? We can fight cancer through building an integrated system that supports patients through the many obstacles that they face. They can be overcome with research, integrated policy and strategic dialogue between all stakeholders, with patients and carers at the core. What is clear, is that there are opportunities and initiatives underway, as many patient testimonials confirmed. Inspired by patients themselves there are tools and platforms that allow them to take a pro-active role in their journey and choices.  The challenge? As explored by Flora Giogio, Head of Sector Health Technology Assessment, DG SANTE at the European Commission is ‘how to combine inclusiveness and high quality with timeliness and resources available. It is important to recognise these messages on national agendas and not just on EU level.’’

In looking forward, new opportunities are rising from the development of the internet and digital technologies as well as initiatives from the European Commission and Public Health Institutes. Roma Maguire, Professor of Digital Health and Care at the University of Strathclyde, explored how technology has empowered patients to take charge of their journey providing new sources of information while big data is adding a new perspective through specialised treatment targeted to the individual and their specific needs. The new Work-Life Balance Directive is a step forward in recognising the needs of carers and as stated by Efi Anastasiou of DG Employment, Social Affairs and Inclusion at the European Commission it ‘’is the first time in EU legislation that the role of the carer is recognised’’. At a national level, Sciensano, as described by Head of Service, Marc Van Den Bulcke, is working on genome sequencing to foster ‘’personalise medicine.’’ Through initiatives like this, improving the general understanding of cancer and making the voices of cancer patients heard, we can change our mindset from reaction to prevention, resulting in a better society long term with improved quality of life and public health.

ECPC would like to thank the outgoing Board Members Francesco de Lorenzo, President, Kathi Apostolidis, Vice-President, Jana Pelouchová, Secretary, Ken Mastris, Matti Järvinen and Maude Andersson, and welcome the new Board Members: Kathi Apostolidis, President, Pietro Presti, Vice-President, Beata Ambroziewicz, Treasurer, Jacqueline Daly, Secretary, Maude Andersson, Robert Greene and Vasile Ianovici.

‘’I am honoured to fill this role, and, although I understand that it is a huge responsibility and commitment, I am excited for what the future will bring.’’ – Kathi Apostolidis

We would also like to thank the outgoing Audit Committee Members Pietro Presti, Chair, Istvan Balogh and Nicolas Philippou, and welcome the new Audit Committee Members: Constantine N. Nicolaides, Chair, James Caldwell and Roberto Persio.

Finally, a special thank you to our past president Francesco de Lorenzo for his commitment, vision and energy. His legacy will remain with us as he fills the role of Chair of the Scientific Committee.

 

Presentations and documents to download: 

Programme of the ECPC Annual Congress 2019 

Pre-congress Workshops: 

 

Annual Congress:

Opening Session (Francesco de Lorenzo, ECPC President)

European Commission Proposal on Health Technology Assessment Cooperation and Patient Involvement in HTA (Flora Giorgio, Head of Sector HTA, DG SANTE, European Commission)

Work-Life Balance Directive and European Pillar of Social Rights, from regulation to implementation (Efi Anastasiou, European Commission, DG EMPL)

The era of new advanced cancer diagnostics (Marc van den Bulcke, Head of Service, Cancer Centre, Sciensano)

ECPC's highlights and achievements of the past year (Francesco de Lorenzo, ECPC President)

Europe of Social Disparities:

Antonella Cardone, ECPC Director

Roberto De Miro,, Chair of the ECPC Legal Network for Cancer Patient

Embracing Carers (Mihaela Militaru, Senior Director, EU Patient Advocacy, Merck Group)

eSMART (Roma Maguire, Professor of Digital Health and Care, University of Strathclyde)

Introduction to Digital Health (Kathi Apostolidis, ECPC Board Member)

European Liquid Biopsy Academy (Danijela Koppers-Lalic, VU Medical Center, Cancer Center Amsterdam)

What is biobanking and why it matters to cancer patients? Diagnostics, genomics and personalized medicine (Francesco Florindi, Strategy and Partnership Manager, BBMRI-ERIC)

HTA Educational module (Alex Filicevas, Head of EU Affairs, ECPC / presented by Max Schravendeel, Health & Research Officer, ECPC)

Malnutrition and Cancer (Isabelle Manneh, Head of Health & Research Programmes, ECPC)

 

 

Sunday AGM

ECPC Members share their best practice

IREN: A practical tool for cancer patients who consider participating in a clinical trial (Institut Jules Bordet - Patrick Miqueu, Belgium)

Unmet needs of cancer patients and their families are being met by Volunteer-led community-based cancer support centre - But not everyone can access this support (East Galway and Midlands Cancer Support - Frances Drummond, Ireland) 

20 years support for women (Mamma help - Jelena Burianová, Czech Republic)

Lenphoedema Prevention, early detection and treatment (Living well with cancer - Maria Theodoridou, Greece)

Capacity Building for Nurses (Myeloma Euronet Romania - Lucian Andrei Despa, Romania)

Best Practice from their organisation(Alliance of Women with Breast Cancer - Marta Kostrová, Czech Republic)

 

 

 

 

 

Friday, 7th June

09:30 – 13:00 Pre-congress Workshops & Events

 

13:00 - 14:30 Registration (ROOM: Foyer 1)

14:30 – 15:00 Opening Session moderated by Tamsin Rose (ROOM: Ball Room 1 + 2)

Chaired by ECPC President, Francesco de Lorenzo

Welcome word by MEP Lieve Wierinck

15:00 – 15:30 European Commission Proposal on Health Technology Assessment Cooperation and Patient Involvement in HTA

Flora Giorgio, Head of Sector HTA, DG SANTE, European Commission

15:30 – 16:00 Coffee break and group photo

16:00 – 16:30 Work-Life Balance Directive and European Pillar of Social Rights, from regulation to implementation

Efi Anastasiou, European Commission, DG EMPL

16:30 – 17:00 The era of new advanced cancer diagnostics

Marc van den Bulcke, Head of Service, Cancer Centre, Sciensano 

17:00 – 17:30 Closing of the day

 19:00 - 22:00 Dinner (ROOM: Ball Room 1 + 2)

 

Saturday, 8th June

09:00 - 09:30 Registration to the Congress (ROOM: Foyer 1)

09:30 - 09:40 Introduction to the programme of the day moderated by Tamsin Rose (ROOM: Ball Room 1 + 2)

09:40 – 10:15 ECPC's highlights and achievements of the past year

ECPC President, Francesco de Lorenzo

10:15 - 11:00 Social Disparities & Work-Life Balance Directive moderated by Tamsin Rose   

Chaired by: Kathi Apostolidis, Vice-President ECPC and Francoise Meunier, Vice-President FEAM

  • Europe of Social Disparities

 Antonella Cardone, ECPC Director

 Roberto De Miro, Chair of the ECPC Legal Network for Cancer Patients

  • Embracing Carers

Mihaela Militaru, Senior Director, EU Patient Advocacy, Merck Group

11:00 - 11:30 Coffee Break (ROOM: Foyer 1)

11:30 - 13:00 Digital Health moderated by Tamsin Rose (ROOM: Ball Room 1 + 2)

Chaired by Ken Matris, ECPC Board Member

eSMART

Roma Maguire, Professor of Digital Health and Care, University of Strathclyde

Introduction to Digital Health

Kathi Apostolidis, ECPC Board Member

13:00 - 14:30 Lunch buffet (ROOM:Lisbon/Madrid/Essen/Copenhagen/Warsaw)

14:30 - 15:30 Personalised medicine moderated by Tamsin Rose

(ROOM: Ball Room 1 + 2)

Chaired by Matti Järvinen, ECPC Board Member

European Liquid Biopsy Academy

Danijela Koppers-Lalic, VU Medical Center, Cancer Center Amsterdam

What is biobanking and why it matters to cancer patients? Diagnostics, genomics and personalized medicine

Francesco Florindi, Strategy and Partnership Manager, BBMRI-ERIC

15:30 - 16:00 Coffee break

16:00 – 16:30 HTA Educational module

Alex Filicevas, Head of EU Affairs, ECPC

16:30 – 17:00 Malnutrition and Cancer

Isabelle Manneh, Head of Health & Research Programmes, ECPC

17:00 - 17:30 Mindfulness-based cognitive therapy

 19:15 - 23:00 Dinner (ROOM: Ball Room 1 + 2)

 

Sunday, 9th June

09:00 - 10:00 ECPC Members share their best practices (ROOM: Ball Room 1 + 2)

Chaired by Maude Andersson, ECPC Board Member

10:00 - 10:30 ECPC Website and Social Media presentation

Clémence Morinière, Communication and Partnerships Manager, ECPC

10:30 – 11:00 Coffee break (ROOM: Foyer 1)

11:00 – 13:00 Annual General Meeting (AGM) (ROOM: Ball Room 1 + 2)

11:00 – 11:15 Introduction to the new Director and Activity Report

11:15 – 11:30 Financial Report, Audit Committee 

Pietro Presti, Audit Committee Chair, ECPC
Antonella Cardone, Director, ECPC

11:30 – 11:45 2019 Action Plan, Antonella Cardone, Director, ECPC

11:45 – 12:00 2019 Budget, Antonella Cardone, Director, ECPC

12:00 – 12:15 AGM Release of responsibility of the current board

12:15 – 12:45 The past President introduces the new board

12:45 – 13:00 Conclusions and closing of the AGM

 

 

 The 2019 ECPC Annual Congress is supported by

 AbbVie             

    

Genomic Health       Eli Lilly and Co      

    

Genomic Health       Eli Lilly and Co      

         

    

Documentation of the ECPC Annual Congress 2018 

 ECPC Annual Congress 2018
8 - 10 June 2018
Hotel Renaissance
Brussels, Belgium

 
Download meeting handouts
Annual Congress Agenda 
Speakers' Bios
Board and Audit Committee
List of Participants
Annual Report 2017
Financial Report 2017 
Minutes of the 2017 ECPC AGM
Minutes of the 2018 ECPC Annual Congress (draft)
ECPC Statute 2018 (approved by ECPC General Assembly, pending publication in Belgian Gazette)
ECPC General Regulations 2018
Evaluation Form

View the photos here


From 8-10 June, 210 stakeholders from 156 organisations and 35 countries gathered in Brussels for the 2018 Annual Congress of the European Cancer Patient Coalition. Representatives from patient organisations, academia, health professionals, and industry met to discuss communication, health technology assessment, immuno-oncology therapy, and survivorship. Members of the European Cancer Patient Coalition were also selected to share their best practices, successes, and challenges.

The President of the European Cancer Patient Coalition, Francesco De Lorenzo, presented some of the Coalition’s successes in 2017. The Coalition actively participated in the European Commission public consultation on the future of Health Technology Assessment, were co-authors of the European Commission’s “CanCon European Guide on Quality Improvement in Comprehensive Cancer Control”, and successfully advocated for improvements to the World Health Organisation’s 2017 Cancer Resolution. The Coalition is very proud to be invited to join the European Commission's Innovative Partnership Action Against Cancer, which has just been launched. The European Cancer Patient Coalition is one of the few cancer patient organisations directly involved in research. In 2017, the Coalition was an active member of two Innovative Medicines Initiative projects, four Horizon 2020 projects, and one Seventh Framework Programme project.

“These results are an important achievement for all Members of the European Cancer Patient Coalition. The ultimate mission of our organisation is to listen to our Members and represent them at the European level.” said Francesco De Lorenzo, President of the European Cancer Patient Coalition. “Each one of our Members are essential for the work of our organisation, and I warmly thank all of them for their tireless work to support Europeans affected by cancer.”

In a session chaired by European Cancer Patient Coalition Vice President, Kathi Apostolidis, participants discussed the current situation and future EU cooperation on Health Technology Assessment. A draft online educational module for patient organisations, developed by the European Cancer Patient Coalition, was presented for feedback. Furthermore, there were presentations on reimbursement, how to create a win-win situation, and the European Commission’s proposal for stronger EU cooperation on Health Technology Assessment.

This event was held under high patronage of the Her Royal Highness Princess Astrid of Belgium, the European Parliament, and the European Commission. In a video message from the European Commissioner of Health & Food Safety, Vytenis Andriukaitis stated “Cancer patients across Europe regrettably face disparities and delays in accessing innovative technologies that work, therefore I think that the focus on Health Technology Assessment for this Annual Conference is excellent. This is a very important and very relevant issue. I believe that EU cooperation has clear potential to facilitate innovative technologies across Europe that truly provide patients with the best treatment available for their specific conditions. The European Parliament and Council are currently discussing the Commission’s proposal on HTA. This is the moment that the constructive input of the European Cancer Patient Coalition and all patient organisations is of crucial importance. I would like to thank you for your continued engagement and strong support on our HTA proposal.”

 

Speakers' presentations

FRIDAY 8 JUNE - Annual Congress

ECPC's Achievements in the past year

  • ECPC President, Board and Secretariat (Video to be uploaded)

Communicating with People affected by Cancer past


SATURDAY 9 JUNE - Annual Congress

Panel I: Health Technology Assessment (HTA) 

HTA online education module

Overall aims
Presentation of the animation
Introduction to the purpose of the session
Module Content Overview
Module structure, functionality and supporting booklet
“Guided Tour” of each chapter of the module

HTA and reimbursement

Overview of the European Commission’s HTA proposal

How to create a win-win solution

 

Panel II: Immuno-oncology therapies & molecular testing

The basics of tumour immunology

 Molecular testing in the era of personalised medicine

 

Panel III: Cancer Carers

ECPC White Paper on Cancer Carers

 Eurocarers Cancer Carers Toolkit, produced in collaboration with ECPC

 

Panel IV: ESMO-ECPC Survivorship Guide


ECPC Members share their best practices, successes and challenges

01. Czech Republic: Mamma Help 

02. Finland: PROPO

03. Greece: Alma Zois Athens

04. Greece: SYKAFIAR

05. Greece and Turkey: Karkinaki and Pembe Hanim #ECPC2018

06. Latvia

07. Poland: Polish Cancer Patient Coalition

08. Romania: Romanian Association for Services and Communication in Oncology (APSCO)

09. Spain: Spanish Organisation Against Cancer (AECC)

10. Turkey: Hope and Life Association

 


SUNDAY 10 JUNE - General Assembly Meeting

 Presentation of the 2017 Annual Report 

 Presentation of the 2017 Financial Report 

 

Message from EU Commissioner for Health Vytenis Andriukaitis to all ECPC Members

 

 The 2018 ECPC Annual Congress was supported by:

 AbbVie             

    

Genomic Health       Eli Lilly and Co      

                 

    

  TESARO logo 364x69

 

 

Documentation of the 2017 ECPC Annual General Meeting 

 ECPC Annual Meeting 2017
16 - 18 June 2017
Hotel Renaissance
Brussels, Belgium

Event organised under the high patronage of the European Parliament
and Her Royal Highness Princess Astrid, Belgium

 


 Download the meeting handouts

General Meeting Agenda 16 - 17 June
General Assembly Agenda 18 June [ECPC Members Only]
Speakers' Bios
Board and Audit Committee
Annual Report 2016
Financial Report 2016 
Minutes of the 2016 ECPC AGM
Evaluation Form

View the photos here


ECPC welcomed more than 180 participants to the 2017 Annual General Meeting. This yearly event has grown to become the largest patient gathering in Europe and this year had the pleasure of hosting participants from 141 different organisations from 42 different countries, offering a strong mix of knowledge, experiences and ideas.The event, which took place in Brussels from 16 - 18 June, included presentations from key activists in Oncopolicy, included input from members on national activities, much lively discussion, an interactive workshop and great networking opportunities.

Before the opening ceremony there were 3 pre-meetings, providing an opportunity for the ECPC Working Group on Rare Cancers (WGRC), ECPC Working Group on Bladder Cancer (WGBC) and ECPC Legal Network for Cancer Patients (LNCP) to meet face-to-face in order to strengthen future collaboration. The Working Group on Rare Cancers received a great deal of new interest, welcoming 13 new members.

The Opening Ceremony on the Friday 16 June welcomed all participants, introduced ECPC’s  Board members and Director and summarised ECPC’s achievements in the past year. This introductory session was followed by a gala dinner which promoted peer support and initiated cross-country networks.

Saturday 17 June encompassed a tightly packed agenda, kicking off with presentations on CanCon (Cancer Control Joint Action), introducing the European guide on quality improvement and covering expert recommendations on its uses, limitations and application at national level. The focus was then shifted to the topic of Nutrition; analysing the results of the ECPC Nutrition and Cancer patient survey and highlighting the importance of nutritional support for cancer patients.

After lunch, participants and speakers discussed increasing patient involvement in cancer research and treatment, during which the Memorandum of Understanding between ECPC and the European Organisation for Research and Treatment of Cancer was signed.

This session was followed by a new initiative where ECPC members were given the opportunity to share best practices and national experiences. During the discussion which followed it became apparent that this session was truly valued, by way of introducing our member organisations to one another and highlighting areas of work for potential collaboration.

This was followed by the discussion on cost-effectiveness in cancer research and care in reflection of a patient survey on financial issues surrounding cancer treatment. The final session of the day was on cancer rehabilitation and self-management, encompassing a talk on the benefits of behavioural therapy and physical exercise for people with cancer and a practical workshop on guided self-care relaxation and mindfulness; supporting our participants to wind down after an intensive, productive and fruitful day before heading into dinner. 

Sunday 18 June was a closed session for members only; ECPC’s General Assembly. ECPC’s board presented the annual and financial reports, strategy for the upcoming year and requested ECPC members to vote to approve actions.

ECPC is delighted with the success of the event showed, once again, that the patient voice is getting stronger.

Speakers' presentations

FRIDAY 16 JUNE - Opening Ceremony

ECPC's Achievements in the past year


SATURDAY 17 JUNE - Annual Meeting

Panel I: Joint Action on Cancer Control

 

PANEL II - Nutrition

 

PANEL III: Increasing patient involvement in cancer research and treatment

 

Listening to ECPC Members

Cost-effectiveness in cancer research and care

 


SUNDAY 18 JUNE - General Assembly Meeting


ECPC AGM 2017


 The 2017 ECPC Annual Meeting was supported by:

 

AbbVie        Amgen        AstraZeneca

 

Boehringer Ingelheim        BMS        Celgene

 

Genomic Health        Ipsen              J and J

 

 

Eli Lilly and Co            Novartis            Pfizer            Roche

 

 

 

 

 

Documentation of the 2016 ECPC Annual General Meeting

  

Læs mere: AGM 2016

The ECPC Annual General Meeting 2015 took place at the Renaissance Hotel in Brussels, Belgium, from the 19th to the 21st June.

Læs mere: AGM 2015

Documentation of the 2014 ECPC Annual General Meeting

 

Læs mere: AGM 2014

 

AGM Minutes 2013

 ECPC AGM 2012 Minutes

Læs mere: AGM 2012

 

ECPC AGM 2011 Minutes

 

ECPC financial report 2011

 

ECPC AGM 2010 Minutes

 

ECPC Annual Financial Report 2010

ECPC AGM 2009 Minutes

Læs mere: AGM 2009

 

2009 08 Audit Report 2008

 

ECPC financial report 2007

 

ECPC financial report 2006