Jarc logo                                                                               ERNs

The Joint Action on Rare Cancers (JARC) is aimed to integrate and maximize efforts of the European Commission and EU Member States to advance quality of care and research on rare cancers. 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. Accordingly, JARC is shaping its efforts around the European Reference Networks (ERNs): three of which are specifically devoted to rare cancers, have been conceived by the EU Commission as a means to provide “highly specialised healthcare for rare or low-prevalence complex diseases”. 
The formal activation of European Reference Networks is a cornerstone in the EU cooperation on rare cancers, and this Joint Action should be, instrumental to help them evolve by optimizing the process of ERN creation through the provision of operational support and professional guidance in the areas of quality of care, epidemiology, research and innovation, education and state of the art definition on prevention, diagnosis and treatment of rare cancers. The Joint Action on Rare Cancers and the European Reference Networksare crucial game changers for rare cancer patients in Europe bringing together scarce knowledge and fragmented resources to maximise synergies and results.             



               "Nothing about us without us!" ECPC 



 The European Cancer Patient Coalition (ECPC) is honoured to be one of the patient organisations representing the needs, rights and hopes of rare cancer patients in the JARC. ECPC counts on the expertise and collaboration of rare cancer patient organisations all over Europe to continously represent the rare cancer patient community.  Accordingly, following the formal request of several rare cancer patient representatives at the ECPC's AGM 2016, ECPC has established a Working Group on Rare Cancers (WGRC) working in parallel with the JARC, inorder 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. ECPC will build on experience gained during its 3 years collaboration in the RARECAREnet project.


- 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: Isabelle Manneh-Vangramberen, ECPC Projects Coordinator
  • WGRC Vice Chairs: Laura D'Avanzo from Glioblastoma Multiforme - Cancro al Cervello, Italy and Mary Skehan from Slainte an Chlair, Ireland


- 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.


- Join WGRC

Kindly contact Isabelle Manneh-Vangramberen, 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 Documents

WGRC Members coming soon..

WGRC Terms of Refrence (ToRs)

WGRC Meeting Minutes October 2016


- WGRC Meetings

WGRC GoToMeeting March 2017

WGRC Meeting June 2017


- Patient Guides

As part of its ongoing work to support people with rare cancers, ECPC is working to identify, produce, and disseminate patient information on rare cancers. We are also looking for suggestions from our Members for additional patient guides that they would find useful. Currently, patient guides on rare cancers include:


- Related News

ECPC activities within RARECAREnet

Joint Action on Rare Cancers Launch

WGRC Call for Expression of Interest

WGRC Meeting October 2016

WGRC Online Platform KickOff

WGRC Vice Chairs Elected

JARC WP2 KickOff coming soon..

JARC WP7 KickOff coming soon..