Implementing the Rare Cancer Agenda

Professor Paolo Casali explains how Rare Cancers Europe is helping to implement the 2030 Rare Cancer Agenda.
credit: Rare Cancers Europe

Rare cancers account for slightly less than a quarter of newly diagnosed cancers and touch the lives of more than four million EU citizens. Given the low prevalence of each rare tumour, this community faces specific challenges that require a collective effort from all stakeholders.

At the launch of Europe’s Beating Cancer Plan, I was very pleased to hear the EU Commissioner for Health and Food Safety, Stella Kyriakides, confirm that rare cancers will have a place in this initiative.

We at Rare Cancers Europe (RCE) are keen on supporting the European institutions in building a comprehensive and effective plan. I agree with the Commissioner when she says that this must be a collaborative effort based on the progress that we have already achieved.


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Surely, when it comes to rare cancers, it is paramount to build on the foundations already laid down by initiatives such as RCE. RCE, a multi-stakeholder initiative founded in 2008 and coordinated by the European Society for Medical Oncology (ESMO), works to overcome the unique challenges faced by the rare cancer community from the perspectives of patient and research organisations, healthcare and education providers, scientific societies and industry.

In the next decade, we will steer the implementation of the Rare Cancer Agenda 2030, the overarching deliverable of the recently completed EU Joint Action on Rare Cancers (JARC).

The JARC’s recommendations stem from the belief that healthcare networking and a tailored research methodology are essential to improving the care of rare cancer patients: a conviction also shared by the 38 RCE partners.

In the last 12 years, we have successfully worked towards placing the neglected area of rare cancers higher on the European agenda. We enjoyed many collaborations with Members of the European Parliament to increase awareness of the importance of networking in rare cancers and disseminating best practices, such as the European Reference Networks on rare cancers, which have also been at the heart of the JARC.

"RCE, a multi-stakeholder initiative founded in 2008 and coordinated by the European Society for Medical Oncology (ESMO), works to overcome the unique challenges faced by the rare cancer community from the perspectives of patient and research organisations, healthcare and education providers, scientific societies and industry"

On Rare Disease Day 2020, we launched the Rare Cancer Treatment Portal, a platform that centralises public information regarding the availability of rare cancer treatments in each of the 27 EU Member States and the UK, along with their national reimbursement status, and other relevant information.

The current Pilot includes information on three rare cancers; one per rare cancer family (adult solid, paediatric, haematological); however, RCE is working to include additional rare cancers for the benefit of the whole rare cancer community.

Personally, I am a believer in the promise of big data, machine learning and the like. I feel that rare cancers are an ideal testing field for many artificial intelligence tools. Together with RCE, our aim is to ensure that the rare cancer ecosystem remains a fertile field for innovation.

I believe that by combining our resources and energy, and strengthening collaboration between the European institutions and the rare cancer community, we can deliver better and fairer care to rare cancer patients across Europe.

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