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  • About Rare Cancers
    • Definition of Rare Cancers
    • "Families" and List of Rare Cancers
    • The Burden and the Challenges of Rare Cancers
    • The Added Value of Research on Rare Cancers
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    • 21 November 2012: Joint Statement on EU Clinical Trials Regulation
    • 3 October 2012: Survey Open: Access to Rare Cancer Care in the EU – Have Your Say!
    • 20 July 2012: International survey on Pathology in Rare Cancers launched
    • 12 June 2012: U.S. NCI issues guidance for deliberations on rare cancer trial closures
    • 4 June 2012: Rare cancer research project announces world’s largest release of human cancer genome data
    • 2 April 2012: Cancer Cell Line Encyclopedia may help to improve rare cancer research
    • 27 March 2012: European Alliance for Personalised Medicine calls for early access to personalised medicine
    • 12 March 2012: ESMO Conference on Sarcoma and GIST: Doctors lack awareness of rare forgotten cancers
    • 21 February 2012: European conference explores ways to improve clinical research on rare cancers
    • 15 February 2012: International Childhood Cancer Day: Calls for policy changes
    • 24 November 2011: International Rare Cancers Initiative: EORTC – UK – US Global Collaboration
    • 16 November 2011: Recommendations on Quality Criteria for Centres of Expertise for Rare Diseases adopted by EUCERD
    • 10 November 2011: EU consultation to improve recognition of cross-border prescriptions
    • 24 September 2011: Rare Cancers Europe: New name and new action
    • 24 September 2011: European Multidisciplinary Cancer Congress highlights challenges posed by rare cancers
    • 12 July 2011: EP Workshop on Rare Cancers: The Added Value of Closer Cooperation
    • 20 May 2011: European Platform for Rare Disease Registries
    • 31 March 2011: EurocanPlatform for cross border cancer research launched
    • 22 March 2011: EU Register of Clinical Trials launched Online
    • 15 March 2011: European childhood cancer research in danger
    • 28 February 2011: Rare Disease Day – Focus on Health Inequalities
    • 15 February 2011: MEPs remember Children with Cancer
    • 12 January 2011: EP Meeting: Challenges of Rare Cancers
    • 27 November 2010: Open Letter concerning 2011 UN Summit on Non-Communicable Diseases
    • 9 October 2010: ESMO Rare Cancers Press Briefing
    • 9 October 2010: ESMO 2010 Rare Cancers Press Briefing Videos
    • 7 October 2010: Underestimated Obstacles to Rare Cancer Care
    • 5 October 2010: EP Meeting: Orphan Drugs for Rare Cancers
    • 13 September 2010: European Action Against Rare Cancers Secretariat
    • 9 December 2009: EU Committee of Experts on Rare Diseases
    • 24 June 2009: Launch of European Action Against Rare Cancers
    • 10 December 2008: Rare cancers are common; optimal care is not
  • Rare Cancers Conference 2012
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20 July 2012: International survey on Pathology in Rare Cancers launched

Rare Cancers Europe (RCE) and the European Society of Pathology (ESP) have jointly launched an international survey on Pathology in Rare Cancers today. All healthcare professionals working in pathology are invited to participate in this survey by completing a short online questionnaire.

The questionnaire only takes about 5-10 minutes to complete. The expected outcome of this survey is a set of recommendations on what should be done to effectively improve the accuracy of pathology in the field of rare cancers. The survey was also conducted at the 24th European Congress of Pathology. Pathology – Science for Patients, held from 8-13 September 2012 in Prague, Czech Republic.

Pathology reports set the foundation for successful cancer care. However, many pathologists may be confronted with a specific rare cancer perhaps once or twice in their entire professional career. This is why diagnosing rare cancers accurately can present a real challenge for a pathologist. At the same time, it is extremely important, especially in the field of rare cancers, to combine information from biology, pathology and clinical practice to set up an appropriate treatment plan.

The European Society of Pathology is a partner in the Rare Cancers Europe multi-stakeholder initiative, which is led by the European Society for Medical Oncology (ESMO) and currently includes 30 independent national and international partners. The aims of the European Society of Pathology are to advance pathology in Europe and to facilitate communication between European pathologists.

Rare Cancers Europe aims to address issues of particular relevance in rare cancers, also including late or incorrect diagnosis. Given the potential harm resulting from misdiagnosis, the European Society of Pathology and Rare Cancers Europe have decided to join forces to conduct this survey with a view to identifying related issues and challenges as well as potential solutions.

The survey will remain open until 31 October 2012 and the results will be published on the Rare Cancers Europe Web site. For more information on the European Society of Pathology, visit the ESP Web site.

To participate in the online survey, please click here.

If you prefer to download and complete and/or forward the questionnaire in WORD or PDF format, please click on one of the following links:

  • Questionnaire in WORD format
  • Questionnaire in PDF format

The contact information for returning completed questionnaires by email or fax is given on the questionnaire.

200. Call to Action

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We welcome requests for permission to reprint or translate the information on this website, including the Call to Action Against Rare Cancers, for non-commercial use. However, the content, layout and logo of the website may not be copied without attribution to the campaign, and no modifications of the content, layout or logo are permitted. The cooperating organisations behind this campaign have made every effort to provide accurate information on this website. However, the cooperating organisations and corporate supporters accept no liability for any inaccuracies or omissions, nor can they accept liability for any loss or damage resulting from any inaccuracy in this information or third party information such as details on websites to which we link. The information contained on this website is for educational purposes only. For individual medical care and advice about specific conditions, please contact a doctor.