Jarc logo                                                                               ERNs

The Joint Action on Rare Cancers and the European Reference Networks are crucial game changers for rare cancer patients in Europe bringing together scarce knowledge and fragmented resources to maximise synergies and results. ECPC is honoured to be one of the patient organisations representing the needs, rights and hopes of rare cancer patients in the JARC.

– WGRC Expression of Interest

The European Cancer Patient Coalition (ECPC) counts on the expertise and collaboration of rare cancer patient organisations all over Europe to continously represent the rare cancer patient community. ECPC invites patient experts, Members and non-member organisations with are interested in rare cancers to join our Working group on Rare Cancers (WGRC).

– WGRC Objectives

WGRC representatives provide the patient perspective on the Joint Action on the Rare Cancers and discuss on any topic relevant to rare cancers. Specifically, representatives should:

  • Contribute to the JARC activities, providing feedback and advice on all relevant tasks;
  • Ensure that patient concerns are appropriately addressed within the JARC;
  • Contribute to the development of patient information, rare cancer policies, quality standards for rare cancers, best clinical practices and recommendations;
  • Contribute to the dissemination of patient information on rare cancers both at national and European levels;
  • Provide the patient perspective on the unmet needs of people living with rare cancers in their country;
  • Share with ECPC any other topic related to rare cancers.

– Terms of Reference

WGRC members will draft the Working Group on Rare Cancers’ Terms of Reference (ToRs) which will be submitted for approval to the ECPC’s Board.


– WGRC Membership

WGRC members are ECPC Members (Full and Associate) and non-member organisations with an interest in rare cancers. To this day, the WGRC comprises 30 organisations across Europe.

  • WGRC Chair: Jana Pelouchova ECPC Board Member and General Secretary
  • WGRC Facilitator: Klevisa Ceka, ECPC Projects Coordinator
  • WGRC Vice Chairs: once the Working Group is established, WGRC members will vote for 2 Vice Chairs.


We look forward to having you join as part of our Rare Cancers Working Group team. Kindly contact Klevisa Ceka, ECPC Projects Coordinator stating:

  • your name and function
  • your organisation and contact details
  • your interest to join WGRC

A confirmation email will be sent shortly after the application has been submitted.

– WGRC Meetings

The Working Group pn Rare Cancers will meet in person twice a year: once in a dedicated session during the ECPC Annual General Meeting (AGM) and once in dedicated meeting to be organised by ECPC. Furthermore, WGRC members will meet at least 4 times a year via teleconference.

Save the Date:

WGRC first meeting will be on 13 October 2016, marking the beginning of the JARC.