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Rare Cancers Europe Webinar on “Rare Cancers in All Policies”

Start date
28 Sep 2021
End date
28 Sep 2021

Rare Cancers Europe hosted a webinar on the 28th of September 2021 to officially launch its Call to Action: “Rare Cancers in All Policies”.

The publication of Europe’s Beating Cancer Plan in February 2021 set out a new EU approach to tackle cancer. At its launch, the European Commission stated that the Cancer Plan will address the entire disease pathway, from prevention, early detection, diagnosis and treatment, and quality of life for cancer patients and survivors, focussing on actions where the European Union can add the most value. However, in the Cancer Plan, and in other ongoing policy initiatives, rare cancers have been neglected.

What are rare cancers: 24% of all new cancer diagnoses, including all paediatric cancers, are rare forms of the disease. Rare cancers, including all paediatric cancers, are defined as those with an annual incidence of less than six per 100,000 people in the European Union (EU). With 650,000 new rare cancer diagnoses annually and around 5.1 million people in the EU living with a rare cancer, rare cancers are not so rare.

Challenges faced by the rare cancer community: Patients with rare cancers face a unique set of 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, and few available tissue banks. 

Need for EU action: To tackle the abovementioned challenges, and given that rare cancers have been neglected from recent policy documents such as Europe’s Beating Cancer Plan, Rare Cancers Europe believes that there is a need for additional EU-level action to ensure that rare cancers are not overlooked from the policy agenda. Thus, the webinar on 28th September served as the official launch for our Call to Action: Rare Cancers in All Policies.

The Call to Action is currently endorsed by 39 organisations, the 4 European Reference Networks dedicated to rare cancers, and several Members of the European Parliament and links the topic of rare cancers to Europe’s Beating Cancer Plan and other ongoing policy initiatives. Please find here the list of organisations and Member of the European Parliament that endorsed RCE call to action “Rare Cancers in All Policies”.

The webinar, launching the Call to Action, brought together speakers from EU institutions, European Reference Networks, scientific societies, patient organisations, industry and other crucial stakeholders to discuss the challenges the community is facing and potential solutions. Please click here to see the list of the organisations and Members of the European Parliament that have endorsed the RCE Call to Action “Rare Cancers in All Policies”.

Rare Cancers in All Policies - A Rare Cancers Europe Call to Action

For any additional information, please contact the Rare Cancers Europe – Secretariat:


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