The public health challenge posed by rare cancers combines both the typical problems of rare diseases and cancers where the need of timely diagnosis and access to quality treatment is vital. The EU Joint Action on Rare Cancers (JARC) aims to advance the quality of care and research on rare cancers.

The European Cancer Patient Coalition (ECPC) is one of the patient organisations representing the needs, rights and hopes of rare cancer patients in the JARC. We count on the expertise and collaboration of rare cancer patient organisations all over Europe to continuously represent the rare cancer patient community. 

WGRC members provide the patient perspective on the Joint Action on the Rare Cancers (JARC). 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.

We are currently collecting experiences of rare cancer patients, carers and patient advocates.  The survey consists of questions that will help us understand potential knowledge gaps that rare cancer patients face today. Your contributions will help us in closing the knowledge gap that currently exists. This is crucial for us to learn more about rare cancers and reduce the burden of this disease on patients.

English: Identifying the educational needs of the cancer patient community
French:  Identification des besoins en informations des patients atteints de cancer

Greek:    Προσδιορισμός των επιμορφωτικών αναγκών της κοινότητας καρκινοπαθών
German: Ermittlung des Informationsbedarfs von Krebspatienten
Italian:  Identificazione delle necessità educative della comunità di pazienti oncologici -Closed- Thank you for your feedback! 
Spanish: Identificación de las necesidades educativas de la comunidad de pacientes con cáncer

ECPC invites patient experts, Members and non-member organisations with are interested in rare cancers to join our Working group on Rare Cancers (WGRC). Take this chance to find out more on ECPC’s activities on rare cancers:


We hope you will find this survey and information useful and will share it with everyone who might give their contribution or benefit from it.