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Rare Cancers Europe

 

 

 

RARE CANCERS EUROPE – THE ESSO COMMITMENT


Updates

  • RCE methodological recommendations for clinical research (soon available from this website).
  • Policy strategy on rare cancers/media campaign: RCE is  currently working on a media and awareness campaign to highlight the challenges of rare cancers, particularly when it comes to the development of the European Reference Networks
  • Policy strategy on rare cancers/EU Parliament meeting: trying to identify synergies and common actions with all other stakeholders involved in rare cancers, RCE is planning a meeting in the EU Parliament in March 2015 with the aim to present a sound proposal for a European action in the field of rare cancers
  • Position paper on the pathological diagnosis of rare cancers: to be published in 2015
  • RARECARENet is a EU-funded project in which Rare Cancers Europe is a collaborating partner. This three-year project is based on data provided by 90 cancer registries in 22 European countries, giving a unique opportunity to study the epidemiology of rare tumours in a large population from various countries. The aim of the project is to identify clinical centres of expertise for rare cancers and establish a related information network across Europe.

About

Rare Cancers Europe is an ongoing partnership initiative in which ESSO is involved in the same way as professional societies, cancer and rare disease associations, cancer research organisations, cancer institutes, rare cancer networks and reference centers, professional education and training organisations, patient advocacy groups, and industry.

Rare tumours are rare diseases. Problems related to rare diseases apply to rare tumours as well. Rare diseases including rare cancers are a priority for action in the EU Public Health Programme (2008-2013). The importance of providing accurate information on rare diseases to all European citizens is clearly stated in the Communication of the European Commission “Rare Diseases: Europe’s challenge" and in the Recommendations from the EU Council. Due to their low frequency, rare cancers pose particular challenges such as: late or incorrect diagnosis, lack of access to appropriate therapies and clinical expertise, limited information about them and a dearth of clinical trials. In responses to these challenges, Rare Cancers Europe (RCE) has launched the Call to Action that urges policy-makers and stakeholders to give priority to rare cancers. In particular it is campaigning to: 1) foster the creation of reference networks for the treatment of patients with rare cancers, 2) spread knowledge and clinical guidelines on rare cancers, 3) promote the establishment of clinical databases and registries and 4) empower patients. Against the background described, a key goal is to build on a network of cooperating organisations collaborating in research, promotion and implementation of appropriate solutions to address rare cancers challenges.

Moreover, a project named RARECARENet aims at building an information network to provide comprehensive information on rare cancers to the community at large (oncologists, general practitioners, researchers, health authorities, patients). The project estimated that around 4 million people in the European Union (EU) are affected by rare cancers. Despite the rarity of each of the 186 identified rare cancers, they represent all together about 22% of all cancer cases diagnosed in the EU each year. Building on the experience of the previous project RARECARE and, in collaboration with RCE and many others, RARECARENet aims at building an information network to provide comprehensive information on rare cancers to the community at large (oncologists, general practitioners, researchers, health authorities, patients and their families).

This project will closely collaborate with the European Partnership for Action Against Cancer (EPAAC). Thus, in accordance with the Second Health Program (SHP) and Annual Work Plan, it will contribute to health protection and safety of citizens through actions in the field of cancer. It will help to identify the causes of inequalities in the area of rare cancers, monitoring incidence, survival and prevalence, within the EU and to exchange the best practices to tackle them. The proposed network will increase the existing information about rare cancers and will support a practical use of the information produced in different European countries. There is general agreement that treatment of rare cancers should be concentrated in specialist multidisciplinary centres, and that international collaboration is needed to undertake research in this group of patients.

The other partners in Rare Cancer Europe are: European Society for Medical Oncology (ESMO) - European Organisation for Rare Diseases (EURORDIS) - European Cancer Patient Coalition (ECPC) - European Organisation for Research and Treatment of Cancer (EORTC) - Conticanet - EuroBoNeT - World Sarcoma Network (WSN) - Association of European Cancer Leagues (ECL) - Chronic Myeloid Leukaemia Support Group - International Brain Tumor Alliance (IBTA) - Orphanet - Chronic Myeloid Leukaemia Advocates Network - Sarcoma Patients EuroNet Association (SPAEN) - GIST Support UK & PAWS-GIST - Cancer 52 - International Kidney Cancer Coalition (IKCC) - Chordoma Foundation - Fondazione IRCCS Istituto Nazionale dei Tumori - European Institute of Oncology (IEO); European Society for Paediatric Oncology (SIOP Europe) - Grupo Español de Tumores Huérfanos e Infrecuentes (GETHI) - European School of Oncology (ESO) - European Oncology Nursing Society (EONS) - European Society of Pathology (ESP) - European, Middle Eastern and African Society for Biopreservation and Biobanking (ESBB) - Novartis Oncology (initiating sponsor and industry partner) - Pfizer Oncology (industry partner) - Sanofi (industry partner).

Please click here for a summary of the Rare Cancers Consensus Meeting: "Pathology in Race Cancers", which took place on 10-11 February 2014 in Brussels.

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