About the Campaign

Rare Cancers Europe (RCE) has been established as a partnership of cooperating organisations that work together to place the issue of rare cancers firmly on the European policy agenda, to identify and promote appropriate solutions and to exchange best practice.

Rare cancers, like other rare diseases, pose particular challenges due to their low frequency, including:

  • Late or incorrect diagnosis
  • Lack of access to appropriate therapies and clinical expertise
  • A very limited number of clinical trials due to the small number of patients
  • Lack of interest in the development of new therapies due to limitations in the market
  • Few available registries and tissue banks

Considering these challenges, we campaign to implement the Political Recommendations on Stakeholder Actions and Public Policies that emerged from the conference "Rare Tumours in Europe: Challenges and Solutions", held in November 2008 in Brussels, in particular:

  • To foster the creation of reference networks for the treatment of patients with rare cancers across the EU in order to improve the quality of care
  • To spread knowledge and good practice guidelines on rare cancers, in particular amongst general practitioners and pathologists, with a view to ensure timely and appropriate diagnoses and care
  • To address obstacles to patients’ access to appropriate therapies
  • To encourage regulatory bodies to involve the disease-oriented communities (of both researchers and patients) in the development, approval and assessment of new therapies in rare cancers
  • To encourage the use of alternative statistical methods in clinical research on rare cancers
  • To provide tools and establish frameworks that are appropriate for supporting a joint patient-physician decision-making process in conditions of high uncertainty, which often occur in the treatment of rare cancers, and that will include patients as equal partners in rare cancer treatment and research

With this background, Rare Cancers Europe has launched the Call to Action that urges policy-makers and stakeholders to give priority to the issues linked to rare cancers. In the future, the campaign will also propose potential events or other initiatives if and when the opportunity arises.

An article published in the Rare Tumours Open Access Scientific Journal outlining the goals and activities of Rare Cancers Europe can be downloaded by clicking here.