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. Among the 39 recommendations on stakeholder actions and public policies:
- 8 address regulatory barriers in rare cancer care
- 6 address methodological barriers to rare cancer care
- 9 address the need to centre if expertise and European Reference Networks
- 11 address barriers to patients’ access to care
- 2 on education of healthcare professionals
- 3 on access to information on rare cancers
Rare Cancers Europe (RCE) is a multi-stakeholder initiative dedicated to putting rare cancers firmly on the European policy agenda and to implementing stakeholder recommendations. RCEhas four overarching goals:
- To improve the methodology of clinical studies in rare cancers
- To improve the organisation of health care in rare cancers
- To improve access to information for rare cancer patients toon new therapies in the EU
- To improve the education of healthcare Professional and Information on Rare Cancers
In 2017, RCE partners decided to structure the platform in four task forces each focusing on one of the four overarching goals.
Rare Cancers Europe’s strategy focuses on the development of scientific-based platforms, gathering scientific findings, educating and raising awareness with target audiences, building consensus among professionals and the patient advocacy community, and advocating for the political and stakeholder recommendation of their recommendations.