About us

EU Joint Action on Rare Cancers (JARC)

The framework for EU stakeholders and policy makers to work together, set the agenda at national level and help provide diagnostics, healthcare and support to all our citizens who suffer from rare cancer.

The Joint Action on Rare Cancers is a multistakeholders collaboration between 18 Member States and European Commission, coordinated by the Fondazione IRCCS Istituto Nazionale dei Tumori of Milan. There are 34 partners involved in the JARC including Ministries of  Health/Cancer Control Programmes representatives (Cyprus, Czech Republic, France, Ireland, Italy, Malta, Poland and Spain), universities, public health health institutions, population-based cancer registries, oncological onstitutes, patients associations (ECPC, EURORDIS, CCI-Europe) and other societies/organisations (including the Organisation of European Cancer Institutes - OECI and European Society for Pediatric Oncology - SIOPE).

If you need help, we have a list of frequently asked questions and answers. We strive to give you the best helping possible. Click a question below to view the answer.

A cancer is considered rare if it starts in an unusual place in the body or is an unusual type requiring special treatment. There are many different ideas about what makes a cancer rare but for the purposes of this joint action we are using the "Surveillance of Rare Cancers in Europe’s (RARECARE - http://www.rarecare.eu) definition which identifies rare tumours as those with incidence less than 6 per 100,000 persons / year. You can find our list of rare cancers here

European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to tackle complex or rare diseases and conditions that require highly specialised treatment and concentrated knowledge and resources. You can find more information about how they work here.

Joint Actions are a type of funding instrument under the third EU Health Programme 2014-2020. They encourage and support cooperation between Member States to improve the health policies that benefit their citizens.

The Joint Action on Rare Cancers (JARC) is a 3-year initiative launched in November 2016.

Keep an eye on our News and Events page where we will request your support and involvement.

There is currently a call for expressions of interest to join the European Cancer Patients Coalition’s Working Group on Rare Cancers (WGRC). The WGRC is set-up in order to guarantee that a large number of rare cancer patient organisations, representing different European countries and rare cancer types, will be able to contribute to the activities of the JARC. You can read how to get involved here.