RARECARENet

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

Context

Rare cancers are defined as those with 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. Identifying ways to improve care and outcomes for people with rare cancer is a public health priority.

Project resources

Policy recommendations

RARECARENet: what can be done about rare cancers?

What we’ve achieved

The Surveillance of Rare Cancers in Europe, RARECARENet, is a project funded by the European Union to build a rare cancers information network for patients, oncologists, general practitioners, researchers and health authorities. As part of RARECARENet, a series of multi-stakeholder round tables 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 population sizes. The findings revealed that people with rare cancers 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
RARECARENet

Project funding

The project was initiated and funded by RARECARENet.