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.
On 5 December 2016, ECPC kicked-off a test drive online platform for the Working Group on Rare Cancers (WGRC), as intially discussed during the WGRC’s first meeting on October, inorder to create a safe online space where all the members of can share their thoughts, news and exchange comments.
WGRC Group Members can share To Do Lists, important Deadlines, and work together on creating various WGRC Documents and Files providing their invaluable input on the various activities under the JARC.