Rare Cancers Europe Activity Report 2008-2014
Rare Cancers - Joining Forces for Action
Rare Cancers Europe (RCE) is a partnership dating back to November 2008. Six years have gone by and it is time to appraise what we have achieved together and, of course, to look at the challenges still ahead, and they are many.
The aim of our multi-stakeholder initiative is to work to overcome the particular challenges that rare cancers pose to patients and their caretakers, physicians and other healthcare workers, the research community, governments and industry. These challenges were summarised in our 2009 Call to Action, which built the framework for RCE activities.
We are particularly proud of our consensus documents on the methodology of clinical studies in rare cancers and the consensus process we launched on improving the pathological diagnosis of rare cancers.
From twelve founding members we have grown to 32 partners. As our motto “joining forces for action” says, none of the goals we have set will be attained without a concerted effort. Together we will continue working to ensure communication and proactive sharing of information between stakeholders. We will continue to lobby for a more efficient infrastructure to be set up in Europe for the diagnosis and treatment of rare cancers.
We need better information networks, we need recognised centres of excellence easily available to all patients through efficient cross border healthcare agreements, we need more registries, more cancer biobanks, more educational courses and an improvement in the methodology of clinical trials for rare cancers.
So as we look to the past in this report, we keep in mind what remains to be done. Numbers indicate that there are over 4 million people suffering from rare cancers in Europe today. But patients are not statistics. To each one of them their cancer is a unique and personal battle and they are looking to the community for answers and a reason to hope.
Dr. Paolo G. Casali
Coordinator of Rare Cancers Europe
Medical Oncologist, Fondazione IRCCS
Istituto Nazionale dei Tumori, Milan, Italy