ECPC Annual Congress and AGM 2019

ECPC Annual Congress and Annual General Meeting (AGM)

Renaissance Hotel, Brussels

7 – 9 June 2019

Programme:

Friday, 7th June

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

  • Social Disparities in Cancer (ROOM: Luxembourg/The Hague)
  • Urological Cancers (ROOM: Warsaw)
  • Rare Cancers (ROOM: Copenhagen/Essen)

 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

(due to confidential character of the ppt, the document will not be uploaded)

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

(due to confidential character of the ppt, the document will not be uploaded)

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

Max Schravendeel, Health & Research Officer, 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

Annual Report 2019

Financial Report 2019

Budget 2019

Audit Report 2019

Action Plan 2019

AGM Minutes

ECPC Annual Congress and AGM 2018

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

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.”

 

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

Speakers’ presentations

FRIDAY 8 JUNE – Annual Congress

ECPC’s Achievements in the past year

  • ECPC President, Board and Secretariat 

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

  • Katie Hamilton, Costello Medical

HTA and reimbursement

  • Irina Cleemput, Belgian HealthCare Knowledge Institute

Overview of the European Commission’s HTA proposal

  • Ioana Siska, European Commission, DG SANTE

How to create a win-win solution

Panel II: Immuno-oncology therapies & molecular testing

The basics of tumour immunology

  • Leif Hakansson, Chairman of the CDDF Board of Directors

 Molecular testing in the era of personalised medicine

  • Nicola Normanno, Istituto Nazionale per lo Studio e la Cura dei Tumori

Panel III: Cancer Carers

ECPC White Paper on Cancer Carers

  • Francesco De Lorenzo, ECPC President

 Eurocarers Cancer Carers Toolkit, produced in collaboration with ECPC

  • Claire Champeix, Policy Officer at Eurocarers

Panel IV: ESMO-ECPC Survivorship Guide

  • Kathi Apostolidis, ECPC Vice-President
  • Francoise Meunier, European Organisation for Research and Treatment of Cancer

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 

  • Francesco De Lorenzo, ECPC President

Presentation of the 2017 Financial Report 

  • Andrew Winterbottom, ECPC Treasurer

Annual Report 2018

Financial Report 2018

Budget 2018

Audit Report 2018

Action Plan 2018

AGM Minutes 2018

ECPC Annual Congress and AGM 2017

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

  • ECPC President, Board and Secretariat
    ECPC’s Policy Work
  • Annalisa Trama, Coordination Team, Institutio Nazionale dei Tumori
    The Joint Action on Rare Cancers
  • Isabelle Huys:
    Patient preferences in benefit-risk assessments

SATURDAY 17 JUNE – Annual Meeting

Panel I: Joint Action on Cancer Control

  • Tit Albreht
    European Guide on Quality Improvement in Comphrehensive Cancer Control
  • Stefan Rauh
    ESMO recommendations on survivorship
  • Francesco De Lorenzo How ECPC Members can use CanCon at the national level
  • Mark Lawler Policy paper on disinvestment

 

PANEL II – Nutrition

  • Maurizio Muscaritoli
    Results of the ECPC Nutrition and Cancer patient survey
  • Alessio Molfino Strategies to promote energy balance in people with cancer
  • Francesco De Lorenzo Nutritional support for cancer patients: still a neglected right?

 

PANEL III: Increasing patient involvement in cancer research and treatment

  • Denis Lacombe
    The importance of European clinical trials and how ECPC Members can get involved
  • Françoise Meunier: Cancer survivors should not pay twice
  • Andrew Bottomley Health-related quality of life issues facing people with cancer

 

Listening to ECPC Members

  • Alma Zois
    Defending the rights of cancer patients in Western Greece
  • Association of Cancer Patients in Finland
    Defending the rights of cancer patients – the Finnish way
  • East Galway & Midlands Cancer Support Defending the rights of cancer patients with The Step Study
  • ELLOK Adopting & transposing ECPC cancer policy at national level
  • European Lung Foundation
    Lung cancer website
  • Gliobastoma Multiforme Group
    Coming soon
  • Karkinaki Placing childhood cancer care on the map
  • Lung Cancer Europe Defending the rights of Lung cancer patients
  • MOHA How to partner with decision-makers?
  • Pembe Hanim and Metamazon How solidarity and effective advocacy weathered the tamoxifen crisis in Turkey
  • Hope and Life Association Engaging the public in Cancer awareness campaigns

Cost-effectiveness in cancer research and care

  • Wim H Van Harten Patient survery on financial issues surrounding cancer treatment
  • Neil K. Aaronson The benefits of behavioural therapy and physical excercise for people with cancer

 


SUNDAY 18 JUNE – General Assembly Meeting

  • Francesco de Lorenzo Presentation of the 2016 Annual Report
  • Andrew Winterbottom Presentation of the 2016 Financial Report

 Annual Report 2017

Financial Report 2017

Budget 2017

Audit Report 2017

Action Plan 2017

Minutes of the AGM 

ECPC Annual General Meeting 2016

”Advancing the Rights of Cancer Survivors”

Event organised under the high patronage of EU Commissioner for Health and Food Safety, Vytenis Andriukaitis

From 3rd to 5th June 2016
Brussels, Belgium

Hotel Renaissance

Speakers’ presentations

FRIDAY 3 JUNE – OPENING CEREMONY

ECPC President, Board and Secretariat
PRESENTATION – ECPC 2013 – 2016: What have we achieved in the past three years?

Martin Seychell – Deputy Director General, DG SANTE, European Commission
Message from the European Commission

Prof. Jane Maher – MacMillan’s Chief Medical Officer
Macmillan – Information for patients at its best

Martin Inderbitzin – Initiatior of “My Survival Story” project
Presentation of ‘My Survival Story’ project

SATURDAY 4 JUNE

Session 1: Honouring Cancer Survivors

PANEL I – A EUROPEAN CANCER SURVIVORSHIP PLAN

Prof. Francesco De Lorenzo – President of ECPC
ECPC – ESMO Collaboration: Survivorship and update of ESMO Guidelines

Regine Kiasuwa Mbengi – Belgian Cancer Centre, Scientific Institute of Public Health
CanCon WP 8 Survivorship and Rehabilitation

PANEL II – CANCER AND WORK: BEST PRACTICES AT NATIONAL LEVEL

Isabelle Lebrocquy – oPuce

Seda Kansu – Founder of Pembe Hanim Cancer Patient Organisation, Turkey
The Relay of Life – presentation

PANEL III – YOUNG CANCER SURVIVORS – UNDERESTAMATED AND NEGLATED POTENTIAL

Dr Lars Hjorth – Project Coordinator
The PanCare Network and its EU related projects

Session 2: Understanding Health Technology Assessment (HTA)

Prof. Bruno Flamion – Head of the Laboratory of Physiology and Pharmacology, Molecular Physiology Research Unit, University of Namur
What is HTA and why patients should be involved?

Karen Facey – PhD, Usher Institute of Population, Health Science and Informatics, University of Edinburgh
How can patients improve HTA decision making?

Wim Goettsch – Leader of EUnetHTA Joint Action 3
European Network for Health Technology Assessment (EUnetHTA):
Is a centralised HTA procedure for Europe feasible?

Prof. Francesco De Lorenzo – President of ECPC
ECPC triggering change: our contribution to the revision of Regulation 726/2004

Session 3: Joint Action on Rare Cancers

Dr. Annalisa Trama – Fondazione IRCCS Instituto Nazionale dei Tumori di Milano, Member of JARC, coordinating team
The Joint Action on Rare Cancers

Session 4: Value of Innovation in Oncology

Francesco Florindi – ECPC Public Affairs Coordinator
Value of Innovation in oncology. Accesing new medicines – faster, better

Session 5: ECPC-OECI Joint Declaration

Patrick Miqueu, PhD, Project Manager, Institut Jules Bordet, Brussels
Francesco Florindi – ECPC Public Affairs Coordinator

Towards a Joint Declaration

Session 6: M-HEALTH and E-HEALTH: Understanding the Future of Cancer Care

Kathi Apostolidis – ECPC Vice President
Introduction

Dee O’Sullivan – Managing Direcor of myhealthapps.net
mHealth and eHealth:
Understanding the Future of Cancer Care

Dave de Bronkart – Leader of the Participatory Medicine Movement

SUNDAY 5 JUNE

General Assembly Meeting

Mihaela Militaru – ECPC Director
Presentation of the Financial Report

Annual Report 2016

Financial Report 2016

Budget 2016

Audit Report 2016

Action Plan 2016

AGM Minutes

Scholarship Ceremony

Exhibition of Shirley Bianca

ECPC Annual General Meeting 2015

Speakers’ Presentations

Opening Session

European Commissioner for Health and Food Safety Dr Vytenis Andriukaitis
Video Message to the ECPC AGM 2015

Prof Francesco De Lorenzo
The added value of ECPC policy work

Ms Shirley Bianca
Message of Hope (videopresentation)
Music from the album “The Story in Mind” composed by Kai-nan Huang, performed by Paul Cibis

Session 1: The role of medical nutrition during and after cancer treatment

Prof Maurizio Muscaritoli
Results of the ECPC Nutrition project and future developments

Prof Andre’ Van Gossum
The role of nutrition in fighting cancer

Katharina Stang
Importance of nutrition for pancreatic cancer

Natacha Bolanos
ECPC Survey on Nutrition: Best models for dissemination – The example of GEPAC, Spain

Session 2: Immuno-Oncology: promises, advantages and risks of the 4th pillar of cancer therapy

Prof Burcak Karaka
The role of immuno-oncology in the future of cancer treatments

Prof Heinz Zwierzina
CDDF: a multistakeholder collaboration to speed up access of European patients to immuno-oncology therapies

Szymon Chrostowski
A European Citizens’ Coalition for Immuno-Oncology

Francesco Florindi
ECPC educational initiatives in the field of Immuno-Oncology

Session 3: Clinical Trials

Anastassia Negrouk
Clinical Trials 101: the basics behind clinical research

Laura Pioppo
EU clinical trials portal and Union database – EMA’s cooperation with stakeholders

Prof Nora Kearney
eSMART: mHealth in cancer supportive care

Mateusz Tylicki
How to find clinical trials: ECPC search engine

Session 4: Inequalities in cancer care: input from the ECPC members on the first draft of the paper on “Europe of Disparities”

Prof Mark Lawler
Europe of Disparities

Session 5: EuroCanPlatform Project

Dr Julio E. Celis
What will EuroCanPlatform mean to both patients and institutions

Session 6: Hanover Communications’ top tips for improving the social media engagement of patient organisations

Davide Marchi
Social Media Tips for Cancer Patients’ Associations

Annual Report 2015

Financial Report 2015

Budget 2015

Audit Report 2015

Action Plan 2015

AGM Minutes 2015

ECPC Annual General Meeting 2014

Photo gallery 

Speakers Presentations

Opening session

Ms Lynn Faulds-Woods
The principles on which ECPC was established

Prof Francesco De Lorenzo
Building on our 10-year legacy

Session 1: Patients ask policy makers:can all Europeans access cancer care?

Prof Mark Lawler, Project Lead, European Cancer Concord (ECC)
A catalyst for change: The European Cancer Patient’s Bill of Rights The European Cancer Patient’s Bill of Rights

Mr Antoni Montserrat
The Commissions’ perspective on tackling inequalities in cancer care in Europe in cancer care in Europe 

Session 2: Patient empowerment starts with knowledge

Ms Nathalie Bere, Stakeholder & Communication Division, European Medicines Agency (EMA)
Patient involvement in medicines evaluation within the European Medicines Agency European Medicines Agency

Prof Peter Riegman – Leader of WP10 ‘Biobanking’ of Eurocanplatform
The importance of Biobanking in Cancer- patient’s perspective

Ms Maggie Wilcox – Independent Cancer Patients’ Voice
The importance of Biobanking in Cancer- patient’s perspective

Session 3: Access to cancer care

Prof. Dr. Ion-Christian Chiricuta, Amethyst Radiotherapy Clinic (Romania)
The importance of access to radiotherapy

Ana-Maria Forsea, MD, PhD, Assistant Professor of Dermatology, Carol Davila University of Medicine and Pharmacy Bucharest
The importance of evidence: Cancer registration

Session 4: Cancer patient rights: tools for advocacy

Ms Kathi Apostolidis
The Cross-border Healthcare Directive – A myth or a fallacy ?

ECPC Members take the floor

Elisabetta Ianelli – FAVO (Italy)

Olympia Bitrou – AgaliaZO (Greece)

Hein Jambroers (The Netherlands)

Marie-Marthe Bruck-Clees – A Heart for Cancer Sick Children (Luxembourg)

Andreja C. Škufca Smrdel, Marija Vegelj Pirc, Blaž Bajec – Cancer Patients’ Association Of Slovenia (Slovenia) Cancer Patients’ Association Of Slovenia (Slovenia)

P.A.V.E.L. (Romania)

AGM Minutes 2014

Annual Report 2014

Financial Report 2014

Budget 2014

Audit Report 2014

Action Plan 2014

ECPC AGM 2013

Annual Report 2013

Financial Report 2013

Budget 2013

Audit Report 2013

Action Plan 2013

Minutes 2013

ECPC AGM 2012

Annual Report 2012

Financial Report 2012

Budget 2012

Audit Report 2012

Action Plan 2012

Minutes 2012

ECPC AGM 2011

Annual Report 2011

Financial Report 2011

Budget 2011

Audit Report 2011

Action Plan 2011

Minutes 2011

ECPC AGM 2010

Annual Report 2010

Financial Report 2010

Budget 2010

Audit Report 2010

Action Plan 2010

Minutes 2010

ECPC AGM 2009