How to Get Involved

Rare Cancers Europe (RCE) is a multi-stakeholder partnership initiative of professional societies, cancer and rare disease associations, cancer research organisations, cancer institutes, rare cancer networks and reference centres, professional oncology communication, education and training organisations, patient advocacy groups, and the industry, all working together to put rare cancers firmly on the European policy agenda and to implement 39 political recommendations. These address issues of particular relevance in rare cancers, including methodological and regulatory barriers in rare cancer care, the need for centres of expertise and European reference networks, barriers to patients’ access to care, education of healthcare professionals and access to information on rare cancers.

The strategic focus of Rare Cancers Europe is to develop scientific-based platforms, gather scientific findings, educate and raise awareness with target audiences, build consensus among professionals and the patient advocacy community, and advocate recommendations for political and stakeholder implementation.

An article published in the Rare Tumours Open Access Scientific Journal outlining the goals and activities of Rare Cancers Europe can be downloaded by clicking here.

Rare Cancers Europe is an initiative that brings together European stakeholders with a common aim and commitment to raise awareness about the burden of rare cancers and to tackle rare cancers as an EU health priority. To ensure equal and fair representation, all stakeholders whose objectives fall in line with the overarching aim of Rare Cancers Europe are welcome to join the initiative. However, in order to obtain balanced stakeholder representation, partners representing a specific organisation or interest area shall as far as possible be represented by umbrella organisations operating across multiple European countries. Where European organisations do not exist, national rare cancer groups are welcome as partners.

If your organisation or company is interested in joining and/or supporting the Rare Cancers Europe initiative, please contact us and we will be happy to send you more information.