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

The European Cancer Patient Coalition 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.



1 February 2017: We are proud to announce the results of the ECPC Working Group on Rare Cancers‘ elected Vice Chairs based on popular vote:

                                               Laura D’Avanzo       40%   

                                               Mary Skehan           33.3%     

                                               Viorica Cursaru        13.3%    

                                               Alina Comanesco    6.7%   

 We would like to sincerely thank the candidates and WGRC members for contributing to a successful free and fair election.


In line with ECPC’s WGRC Terms of Refrence, Jana Pelouchova ECPC General Secretary and WGRC appointed Chair will work in parallel with 2 elected Vice-chairs. Congratulations to both Laura D’Avanzo from Glioblastoma Multiforme – Cancro al Cervello, Italy and Mary Skehan from Slainte an Chlair, Ireland!