More than 4 million people in the European Union are affected by rare cancers. Rare diseases are generally defines as diseases with a prevalence of less than 50 patients per 100,000 people per year. A more conservative definition, which takes a number of particularities of natural history and prognosis into account (including the incidence of a cancers with less than 5 patients per 100,000 people per year), suggests that rare cancers represent about 22% of all malignant neoplasm cancers, including all cancers affecting children, teenagers and young adults, diagnosed in the 27 countries of the European Union 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.

Sub-optimal treatment
Lack of medical expertise in the management of rare cancers, poor referral from general practitioners and pathologic misdiagnosis is one of the common problems leading to sub-optimal treatment. However, the outcome for a number of diseases can be improved.

Rare Cancers Europe (RCE) initiative
Rare Cancers Europe (RCE) is initiative from the medical, political and patients community dedicated to putting rare cancers firmly on the European policy agenda. Partners includes representatives from medical research communities, healthcare professionals, EU policy-makers, regulators, patients and the pharmaceutical industry.

The European Society for Medical Oncology (ESMO) is leading the Rare Cancers Europe (RCE) initiative, which aims to improve access to rare cancer care in the European Union. The initiative also aims to draw attention to rare cancers and to raise awareness of the difficult plight patients with rare cancers face. To this end, the RCE partners have jointly decided to do a survey in order to lay the foundation for the first-ever Rare Cancers EU Access Index, comparing different aspects of rare cancer care and policy in the EU.

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The RCE survey is conducted with the help of the Swedish Institute for Health Economics (IHE) and closes on 16 September 2012. It will take 10-15 minutes to complete the survey. All answers will be treated with confidentiality. ESMO encourages all physicians involved in the care and management of cancer patients to participate. The survey results will be disseminated through the RCE network of partners and used for information, education and advocacy purposes. Survey contributors can pre-register at the end of their survey to receive the final report, which is expected in December 2012.

For more information:
– European Rare Cancer Access Index Survey

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