It’s time to accelerate action on rare cancers

13 May 2024

With an estimated 5.1 million people in Europe living with a rare cancer, stakeholders from across the continent and across the cancer care community gathered at the Institut Curie in Paris today to mark the publication of an important new policy initiative: Time to Accelerate: Action on Rare Cancers.

Initiated by, and developed with, ECO’s Patient Advisory Committee, the paper is the latest in a series of publications in the Time to Accelerate: Together Against Cancer campaign.

The new paper highlights past EU cooperation on rare cancers, but also pinpoints abundant new opportunities for progress under the next European Commission (2024-2029) that will take office following next month's European parliamentary elections.

ECO's new policy paper calls for:

  • The EU's rare disease policy agenda should be better integrated with Europe’s Beating Cancer Plan. This should include aligning development of the European Reference Networks with the new EU Network of Comprehensive Cancer Centres.
  • The implementation of the European Health Data Space should be taken as a political opportunity to address continued insufficiencies and lack of harmonisation across Europe in rare cancer registries. Registry information should be widely disseminated to improve understanding and accountability on diagnostic pathways and timescales for rare cancers.
  • Europe’s Beating Cancer Plan should be updated to reflect new science which includes developments in genetic tumour screening.
  • The goals of Europe’s Beating Cancer Plan should be expanded, including for increased access to genomic tumour testing to achieve better access to biomarker-led treatment.  

'Europe’s Beating Cancer Plan is a powerful policy template for addressing shared disease challenges across the continent. This took considerable time and effort,' said Prof. Csaba Dégi, president of the European Cancer Organisation.

'For several decades the EU has been expanding an agenda to better support rare disease policies. As we look to a new European Commission about to take office, we not only call for Europe’s Beating Cancer Plan to be completed, but for it to be refreshed and its targets expanded. For example, linking European Reference Networks with an EU Network of Comprehensive Cancer Centres would be a formidable stimulus for better treatment of rare cancers.'

Adding further comment, Ariane Weinman, ECO PAC member representing Eurordis - Rare Disease Europe, said:

‘Many people affected by rare cancers as well as their caregivers feel isolated and distressed because few health professionals are acquainted with their specific rare cancer. It is crucial that competent authorities support awareness raising of rare cancers and establish well-identified healthcare pathways to ensure that patients have a timely and equitable access to specialised healthcare at both national and European level (European Reference Networks for rare cancers). Also, research on rare cancers must be fostered to develop much needed treatments.'

The full paper ‘Time to Accelerate: Action on Rare Cancers’ is available to download here.