The Rare Cancers Working Group has been established as a partnership of cooperating stakeholders with the scope to place the issue of rare cancers firmly on the European policy agenda, to identify and promote appropriate solutions, and exchange best practice.
Rare cancers belong to both cancers and rare diseases, and face challenges linked to their rarity, but their specificities make them closer to common cancers.
Rare cancers face challenges linked to:
- Late or incorrect diagnosis
- Lack of access to appropriate therapies and expertise
- Lack of commercial feasibility in developing new therapies
- Difficulties in conducting well powered clinical studies
- Few tissue banks
Considering these challenges, The Rare Cancers Working Group has four overarching goals:
- Improving the methodology of clinical studies and regulatory practices in rare cancers
- Improving the organisation of healthcare in rare cancers
- Improving access to rare cancer treatments and standard of care
- Improving the education of healthcare professional and information on rare cancers
The Rare Cancers Working Group’s strategy focuses on building consensus among the rare cancer community, and raising awareness about the specificities of rare cancers, their challenges and the way forward.
Rare Cancers Europe was involved in the development of major initiatives – such as the launch of the Joint Action for Rare Cancers (JARC) and the development of European Reference Networks (ERNs) that have significantly impacted the field of rare cancers.
In light of the JARC coming to an end, The Rare Cancers Working Group (former Rare Cancers Europe) will be taking forward the conclusions of the JARC, namely the Rare Cancer Agenda 2030.