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 Networks are crucial game changers for rare cancer patients in Europe bringing together scarce knowledge and fragmented resources to maximise synergies and results.   

       WGRC (1)          “Nothing about us without us!” ECPC 

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. ECPC counts on the expertise and collaboration of rare cancer patient organisations all over Europe to continuously 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, 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: the European Cancer Patient Coalition has a horizontal role representing the voice of the rare cancer patients across all the work packages. 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 Head of Health and Research Programmes
  • 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 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.


Kindly contact Isabelle Manneh-Vangramberen, Head of Health and Research Programmes 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

WGRC Terms of Reference (ToRs)

WGRC Meeting Minutes October 2016

WGRC Meetings

WGRC Meeting June 2018

WGRC Meeting June 2017

WGRC Meeting October 2016

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:

EU Joint Actions

The 3rd Health Programme is about fostering health in Europe by encouraging cooperation between Member States to improve the health policies that benefit their citizens. The programme aims to support and complement Member States health initiatives and is translated into annual work programmes defining actions in priority areas set in the Programme Regulation EU N° 282/2014.On this basis the Consumer, Health and Food Executive Agency organises every year calls for proposals: Joint Actions are one funding instrument under the 3rd Health Programme 2014-2010.

Joint Action on Rare Cancers (JARC)

JARC is an initiative launched in November 2016 with the goal of contributing to improve health outcomes for patients with rare cancer in the European Union and, thus, decreasing health inequalities across the EU. The Joint Action on Rare Cancers will in particular address the lack of systemic inclusion of rare cancers in national cancer plans across Europe by formulating policy recommendations which will be later implemented by the Member States in relevant in EU initiatives. The Joint Action will be instrumental to ensure proper roll out to the European Reference Networks (ERNs) by optimizing the process of creation of the ERNs.

Contact Points

ECPCIsabelle Manneh-Vangramberen, ECPC Head of Health and Research Programmes

Project CoordinatorPaolo Casaliaolo Casali, Milan Instituto Nazionale Tumori


EU Flag

The Joint Action is funded by the EU Third Health Programme 2014-2020, Joint Action N° 724161.

Project Website


Related News

JARC Brochure 2018

WGRC Meeting 2018 Agenda

WGRC Meeting 2017 Agenda

ECPC activities within RARECAREnet

Joint Action on Rare Cancers Launch

WGRC Meeting October 2016

WGRC Online Platform KickOff

WGRC Vice Chairs Elected