Rare Cancers – more common than most people think
More than 4 million people in the European Union are affected by rare cancers. Despite the rarity of each of the 186 rare cancers, they represent in total about 22% of all cancer cases, including all cancers in children, diagnosed in the EU27 each year. Patients with rare cancers are faced with particular challenges, including late or incorrect diagnosis, difficulties finding clinical expertise and accessing appropriate treatments, difficulties carrying out clinical studies due to the small number of patients, possible lack of interest in developing new therapies, high uncertainty in clinical decision-making, and the scarcity of available registries and tissue banks. Rare Cancers Europe (RCE) is a multi-stakeholder initiative dedicated to putting rare cancers firmly on the European policy agenda and to implementing 39 political and stakeholder recommendations.
Latest News
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30 Oct 2013
New ESMO E-Learning Module: Clinical cases in Malignant Pleural Mesothelioma: Adherence to the ESMO Clinical Practice Guidelines
New module by Dr Wieneke Buikhuisen, Department of Thoracic Oncology, The Netherlands Cancer Institute, Amsterdam now released.
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30 Oct 2013
EUCERD Recommendations on Rare Diseases National Plans, Patient Registration and Data Collection
The EUCERD has issued the following 5 recommendations on centres of expertise, European Reference Networks, registries, indicators for national plans...
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30 Oct 2013
Patients' Rights in Cross-Border Healthcare - Results of the Public Consultation on the Implementation of European Reference Networks
Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on the application of patients' rights in cross border healthcare...