Rare Disease Day: European Reference Networks - Rare Cancers or Forgotten Cancers?

A call for appropriate categorisation of European Reference Networks

  • Date: 29 Feb 2016

Rare cancers represent 22% of all cancer cases in the EU per year and affect over 4 million people in the EU. In spite of representing one fifth of all cancer cases, their representation within the European Reference Networks (ERNs) is still unclear.

We, as Rare Cancers Europe (RCE) and the European Society for Medical Oncology (ESMO), welcome the effort to create ERNs that will streamline the way rare diseases and rare cancers will be diagnosed and treated. However, we would also like the EU institutions and the Member States to understand the specificities of rare cancers and how categorising them appropriately will either drastically improve their diagnosis or be detrimental to the oncology and patient communities.

Rare cancers are complex diseases that affect less than 6 in 100,000 people per year and are categorised in 12 groups, based on their natural families. Given their specific nature that distinguishes them from rare diseases, the European Commission has recognised the need to devote a specific Joint Action on Rare Cancers. The main focus of the Joint Action on Rare Cancers will be on the integration of rare cancers within the ERNs, along with addressing other issues of relevance.

On the occasion of Rare Disease Day, RCE and ESMO would like to call upon the EU institutions to ensure that rare cancers are not forgotten within the ERNs. We urge the institutions to consider having 1 ERN per family of rare cancer (12 overall), as is being done for the rare disease community.


This article originally appeared in the Parliament Magazine on the occasion of World Cancer Day 2016.