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Nothing About Us Without Us! Brussels, The Square Conference Book ECPC Cancer Summit Making the Cancer Partnership work Acknowledgements The ECPC Cancer Summit arises from the project “ECPC Cancer Summit: Making the Cancer Partnership work” which has received funding from the European Union, in the framework of the Public Health Programme. The following additional sponsors are supporting the ECPC Cancer Summit with an unrestricted grant: Bristol-Myers Squibb, Eli Lilly, Novartis, Pfizer, Roche and Sanofi Pasteur MSD The funding enables ECPC e.g. to provide travel bursaries to patient groups from across Europe to attend the ECPC Cancer Summit. Dear Participants, Cancer causes great suffering. Cancer destroys lives and families across the continent. I have met cancer patients on various occasions and I am inspired by their courage and determination in fighting this terrible disease. It is through our unwavering commitment and determination that we can help them in their long and painful fight against the disease. Each of us can make a meaningful contribution. Each of us has a role to play: health professionals, policy makers, administrations, civil society and industry. This is what the European Partnership for Action against Cancer is about. The Partnership provides us the right framework to work together. Our action does not end here. For many cancer patients, the treatment they need can be better provided - or is only available - across borders in another European country. The new legislation on cross border healthcare, once adopted, would enable patients to access safe and good quality healthcare all over Europe, and to be reimbursed for it. The new law would also enable enhanced cooperation at the European level on European reference networks for example for rare cancers, so that patients could access the best possible expertise and treatment for their case. I am committed to supporting action against cancer and would like to thank the European Cancer Patient Coalition for bringing us together to discuss how to make our partnership for action against cancer work. John Dalli, Commissioner for Health and Consumer Policy - 2 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Dear Delegates, I’d like to welcome you to our ECPC Cancer Summit at the Square. This magnificent building and its gardens has been restored and updated into a fantastic venue for this our fifth annual meeting. When you join us for our reception and dinner later you will be able to see some stupendous views over the city from the top floor. This year our conference theme is “Making the Cancer Partnership Work” which is much more policy focused than the more workshop oriented approach we have had over the last four years in our Masterclass series of conferences. Why is this? Two reasons. Firstly its a tribute to you and the way member groups have grown in capacity and capability over the last few years. You are more organized, sophisticated and knowledgeable than ever. When you represent your memberships you can add real weight to their voices and enable them to be heard locally and nationally. Secondly the EU Cancer Partnership will be officially launched next Spring after being announced in September last year. This EU 27 wide initiative has a core objective of the sharing of cancer healthcare resources more effectively and efficiently. The aim is to avoid duplication and ensure coordinated delivery of services across the entire spectrum of institutions and professions involved in research and the provision of care. The slogan “from bench to bedside” neatly sums up the range of focus and the programme carries a clear deliverable of reducing the number of new cancer cases by 15% by 2010. Patient organizations have a key role to play here both locally, regionally, nationally and at the pan european level. We have made sure we have representation in several key areas of the programme so that we can safeguard patients interests and give a voice to your concerns. We have dramatically increased the size of our Brussels office to ensure we have the resources to allow us to fulfill our representative commitments. We also intend to continue to build up our Forum Against Cancer Europe group of MEPs who now number over seventy so that we can ensure your interests are heard in the European Parliament in addition to the Commission. You will be hearing from both MEPs and Commission staff over the next two days and I can assure you they will listen carefully to your informed, expert comments about cancer issues passed on to you by your memberships. Finally let me thank the Commission for the very generous grant they have made to us to enable us to host this year’s event and a special thank you to Commissioner Dalli, his service and also to DG Research for the warm support that they have responded to the concerns of the cancer patient community. Tom Hudson, ECPC President ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 3 - Dear Friends, Many of you know what it means to face the diagnosis of cancer. You know what it means to fight it. But you should not have to be alone in your battle. The European Partnership for Action Against Cancer is a unique effort at European level to combat cancer by bringing together a broad range of warriors committed to saving lives and helping those who suffer. Health professionals, health authorities, civil society organisations, policy makers, experts and many others are ready to commit and work together to achieve the goal of saving half a million lives by 2020. The experience of cancer patients and survivors is important in this joint effort. There are still significant differences in new cancer cases and deaths from cancer across Europe. I am convinced that by working together at European level, we can make a positive difference in this respect. This comprehensive approach to tackling cancer includes several key areas, namely health promotion and cancer prevention, early diagnosis and screening, healthcare, research and health information and data. The European Partnership will enable the exchange of knowledge and best practices, as well as cooperation and the implementation of actions in all of these areas. I hope that the Cancer Patient Summit will contribute to making the partnership work. The role of each of you can be significant in achieving this, not only at European level, but also in your countries, regions, cities. Together, we can achieve more. Paola Testori-Coggi, Director-General for Health and Consumers - 4 - ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK Dear Delegates, The 2010 ECPC Cancer Summit ‘Making the Cancer Partnership Work’ focus is on keeping the “patient at the centre” and with this aim will bring together as equal partners patient organisations, clinicians, researchers, MEP’s, commissioners and, in particular, the Commissioner for Health John Dalli. The aim of the summit is to create a platform for ongoing discussions between all relevant stakeholders in addition to the dissemination of information about the plans for action coming out of the European Cancer Partnership. I am especially proud that this year ECPC gives special attention to the ever growing problem of rare and less common cancers. At last the challenges surrounding access to appropriate and effective care and therapy with rare and less common cancers will be in the spotlight. This, it must be said, is a rarity in itself. Owing to smaller patient populations, we are often the poor relation when it comes to our voice being heard. However the increasing understanding of how the cancer cell develops we will eventually see that even the commonest of cancers will be divided and sub- divided into smaller patient populations. While prevention and screening initiatives are welcomed and supported by ECPC, we are mindful that we also need to take an increasingly different approach when talking about the rare cancers which inhabit an area where such initiatives are not relevant and are of little help. Rather we need not only to discuss the ways in which we can improve access to appropriate and effective treatment and care but also how we can encourage a real commitment to collaborative research programmes by investing in European Networks of Reference. These provide a strong platform for translational research, in other words, research that is transformed from theory and lab based work into effective cancer therapy that saves lives. An approach often named as ‘from bench to bedside’. ECPC’s Rare Cancer Action Group regards as essential actions on collaborative research programmes, centres of expertise and cross border health care and ongoing medical education of health care professionals, especially in the primary care area when timely and correct diagnosis is of crucial importance to the survival of patients with rarer cancers. We particularly support the acceptance by professional and regulatory bodies that patients, through their representatives in the rare cancer community, are involved in the design of clinical trials which have as a feature greater flexibility and a more rational understanding of ‘risk’ in the context of the reduced options available for effective treatment for such patients. All EU citizens deserve access to the best care. Something which member states should have at the heart of their healthcare policy as a right rather than as an aspiration. The Cancer Partnership should go some way towards remedying obstacles and barriers that unnecessarily prevent this being realised. As such it is to be welcomed. Kristina Andrekute, Chair ECPC Rare Cancer Action Group ECPC CANCER SUMMIT 2010 // CONFERENCE BOOK - 5 - TABLE OF CONTENTS About ECPC …………………………………………………………………………………... 7 ECPC Board …………………………………………………………………………………... 14 ECPC Team ………………………………………………………………………...……….… 15 ECPC Members in Action ……………………………………………………………………16 ECPC Membership ……………………………………………………………………………18 The European Partnership for ‘Action Against Cancer’ ……………………………… 24 About the Forum Against Cancer Europe (FACE) …………………………………….

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