Rare Cancers Europe’s Call to Action on “Rare Cancers in All Policies”

Despite representing 24% of all new cancer diagnosis, rare cancers are a neglected area deserving dedicated attention by policymakers.

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. With 650,000 new rare cancers diagnoses annually in Europe and around 5.1 million people living with a rare cancer, these cancers are not so rare. Rare Cancers Europe believes that there is a need for additional EU-level action to ensure that the challenges presented by rare cancers are addressed.

During the course of 2021, RCE developed the Call to Action on "Rare Cancers in All Policies"  as a means to present the partnership’s policy suggestions and ensure that the final report from the European Parliament’s Special Committee on Beating Cancer (BECA), Strengthening Europe in the fight against cancer – towards a comprehensive and coordinated strategy, did not overlook rare cancers. The Call to Action was the outcome of a rigorous exercise among RCE partners and highlights the need for additional EU-level action to ensure that the specificities of rare cancers are considered in the ongoing political discussions.  

The RCE Call to Action links the topic of rare cancers to other ongoing initiatives, such as Europe’s Beating Cancer Plan, the Pharmaceutical Strategy for Europe, the revision of EU rule on Medicines for Children and Rare Diseases, the creation of the European Health Data Space, the evaluation of the Cross-Border Healthcare Directive, amongst others. It is currently endorsed by 40 organisations, the four European Reference Networks dedicated to rare cancers, and several Members of the European Parliament. This level of support is testament to the wide backing for RCE’s proposals and demonstrates that there is significant support for a focus on rare cancers at EU-level.

On 28th September 2021, RCE officially launched the Call to Action via an official webinar event. This brought together speakers from the European Commission, European Parliament, European Medicines Agency, oncologists and e-PAG representatives from the 4 European Reference Networks (ERNs) dedicated to rare cancers (ERN EURACAN, ERN PaedCan, ERN EuroBloodNet and ERN GENTURIS), patient advocates and other crucial stakeholders, such as speakers from the haematological community (EHA) and paediatric community (SIOPE). Perspectives of the pharmaceutical industry were also provided, with the event including a broad scope of contributions from a wide range of stakeholders.

RCE was delighted that the final report, adopted by the European Parliament’s plenary in February 2022, included a call for the inclusion of a dedicated Flagship on rare adult cancers in Europe’s Beating Cancer Plan. The adoption of the final report was a step forward for rare cancers and signifies that the European Parliament understands the importance of ensuring that their specificities are considered in ongoing political discussions.

Rare Cancers in All Policies – An RCE Call to Action

1. Dedicate research funding to rare cancers, which represent 24% of all new cancer cases, including rare adult solid cancers, haematological cancers and paediatric cancers (which are the leading cause of death by disease among children and adolescents in Europe) under the Mission on Cancer, including under UNCAN.eu – the European Initiative to Understand Cancer, among others; establish European strategic initiatives for rare cancers, such as a new Joint Action on Rare Cancers, including rare adult cancers and paediatric cancers.
2. Create a dedicated Flagship on rare cancers within Europe’s Beating Cancer Plan, to tackle the specific challenges faced by the community representing almost one quarter of all new cancer cases; ensure dedicated funding under Horizon Europe for the creation of a European Partnership on Rare Cancers. It is vital that the EU continues to support and reinforce successful past EU-funded projects, such as the Joint Action on Rare Cancers.
3. Guarantee funding for the continued functioning of (European Reference Networks) ERNs, through the EU4Health Programme, the European Semester programme, Structural Funds, and through Article 195 of the Financial Regulation.
4. Encourage the creation of national networks for the rare cancer ERNs on rare adult solid cancers, haematological neoplasms, and rare genetic tumour risk syndromes.
5. Engage with multistakeholder partnerships such as Rare Cancers Europe, on a regular basis to ensure that the work done by the rare cancer community is reflected in policy actions.
6. Encourage the creation of user-friendly, interoperable and harmonised IT solutions to allow for easy exchange of cases, knowledge and discussion on complex cancer cases and treatment pathways.
7. Support the integration of existing robust, widely used clinical practice guidelines, developed by learned oncology societies, into EURACAN, EuroBloodNet, PaedCan, GENTURIS - the ERNs for rare adult solid cancers, rare haematological diseases, paediatric cancers and rare genetic tumour risk syndromes; Support the recognition and adoption at national level of clinical guidelines developed or reviewed by ERNs.
8. Develop clinical registries linked to ERNs and population-based disease registries, in collaboration with the European Network for Cancer Registries (ENCR), to encourage the collection of clinical data on rare and ultra-rare cancers.
9. Create a medical ERASMUS for ERNs, in collaboration with European and national educational institutions, and encourage mobility within ERNs, to strengthen the scarce professional competence to treat complex rare cancers; support increasing levels of health literacy of patients, carers and patient organisations’ representatives.
10. Ensure the harmonisation and adoption of joint clinical assessments under the draft HTA regulation at EU level to overcome current disparities, inefficiencies and delays generated by unjustified duplicative actions and improve access to medicines, starting with cancer as a pilot.
11. Include a rare adult cancer component, as well as a component on paediatric cancers, in all national cancer plans, including links with the European Reference Networks, to ensure all rare adult cancer patients and paediatric cancer patients receive the same high-quality care as other patients.
12. Support novel regulatory approaches for evidence generation in rare cancers, such as the European Medicines Agency’s adaptive licensing pilot, allowing to dynamically incorporate the generated new evidence into the decision-making process.
13. Recognise the difficulty in finding biomarkers for patients with a rare cancer and create a framework to incentivise research in biomarkers for rare genomic alterations to improve early detection and an accurate diagnosis.
14. Acknowledge the specificities of rare cancers in programmes dedicated to improving the quality of life for cancer patients, survivors and carers, and encourage specific training for professionals, other than healthcare providers, taking care of rare cancer patients.

Please click here to find the full text of the Call to Action.