Rare cancers represent almost a quarter of new cancer diagnoses in Europe – so improving patient outcomes should be a public health priority. 


Rare cancers are defined as having an incidence of less than 6 per 100,000 people per year. The small number of cases means diagnosis is often delayed or inaccurate.  

Rare cancers represent 22% of all new cancer diagnoses in Europe, and are often associated with poor survival. This means that identifying ways to improve care and outcomes for rare cancer patients is a public health priority.

Download project output


RARECAREnet policy recommendation


Rare cancers represent 22% of all new cancer diagnoses in Europe

An estimated 4 million people in the EU are affected by a rare cancer

Rare cancers have poorer survival than more common cancers.

What we achieved

As part of the RARECAREnet project, a series of multi-stakeholder roundtables were held in Belgium, Bulgaria, Slovenia and Ireland. The aim of these meetings was to discuss how best to address the challenges posed by rare cancers in each country.

The four countries in this project were selected to cover a range of national contexts and populations sizes. The findings revealed that rare cancer patients in each country have different experiences and outcomes.

Following the meetings, HPP helped the project leaders develop accessible reports for each country, along with an overall policy brief summarising recommendations.

Key partners and stakeholders

  • European Cancer Patient Coalition

The project was initiated and funded by RARECAREnet.