Skip over navigation

Rare Cancers Europe logo

  • 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
  • About the Campaign - Objectives
  • Call to Action
    • Full text
    • Signatories
  • Political Recommendations
  • EU initiatives
  • How to get involved
  • News
    • 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
  • Surveys
  • Events
  • Cooperating organisations
    • Campaign Organisation Committee
    • Governance principles
    • Video testimonials from Cooperating organisations
    • Quotes from the Cooperating organisations
  • Corporate supporters
  • Links
    • General Cancer Patient Support Organisations and Sites
    • Rare Cancer Type-Specific Patient Support Organisations and Sites
    • General Professional Organisations, Research Organisations and Sites
    • Cancer Type-Specific Professional Organisations, Research Initiatives and Sites
    • Clinical Practice Guidelines for Professionals and Guides for Patients
  • Campaign materials
  • Contact us

EU initiatives

Cancer and rare diseases have been on the EU political agenda in recent years. Here we list a number of initiatives focused on these disease areas. A conference on "European Actions to improve the life of patients living with rare diseases" was held from 25–26 October 2011 in Luxembourg. An overview of the conference and related documents can be found here.

Policy initiatives on rare diseases/rare cancers:

  • RARECARENet - Information network on rare cancers RARECARENet kick-off meeting presentations can be viewed here.
  • European Platform for Rare Disease Registries (EPIRARE)
  • European Union Committee of Experts on Rare Diseases (EUCERD)
  • European Commission Communication on Rare Diseases: Europe’s Challenges
  • Council Recommendation on an Action in the field of Rare Diseases
  • Community action programme on rare diseases
  • High Level Pharmaceutical Forum’s guiding principles on improving access to orphan drugs to all citizens in Europe
  • EU Orphan Drug Regulation
  • RARECARE (Surveillance of rare cancers in Europe), including definition of rare cancers and list of rare cancers
  • EU Rare Diseases Task Force
  • Provisions on rare diseases of the Commission’s proposal for a Directive on the Application of Patients’ Rights in Cross-border Healthcare and the European Parliament’s report on the issue

Policy initiatives on cancer/promoting health:

  • European Commission Communication on Action Against Cancer: European Partnership
  • European Partnership for Action Against Cancer
  • European Parliament Resolution on Combating Cancer in the Enlarged European Union
  • Health Council Conclusions during the Slovenian Presidency (Jan – Jun 2008) on Reducing the Burden of Cancer
  • Council Recommendation on Cancer Screening in cervical, breast and colorectal cancer
  • European Commission’s White Paper Together for Health: A Strategic Approach for the EU 2008-2013
  • 2nd programme on Community action in the field of health
  • Seventh EU Research Framework Programme 2007-2013 (FP7)
200. Call to Action

© Rare Cancers Europe 2012. All rights reserved.
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.