Why it matters

ECPC counts on the expertise and collaboration of rare cancer patient organisations all over Europe to continuously represent the rare cancer patient community. Following the formal request from 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 Joint Action on Rare Cancers, 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 its activities.

ECPC invites patient experts, members and non-member organisations with a shared interest in rare cancers to join our Working Group on Rare Cancers (WGRC).

What ECPC does

WGRC representatives provide the patient perspective on the Joint Action on Rare Cancers and discuss any topic relevant to rare cancers. The WGRC is engaged in dissemination of informational material to raise awareness to the medical community to improve early, timely and correct diagnosis and to patients to empower them with information on rare cancers and how to get in touch with Contact Points at the national level. The WGRC furthermore contributes to the vitality of the European Reference Networks (ERNs) by disseminating information to the medical and non-medical community, ensuring patients are referred to centres of excellence. The WGRC also integrates patient views in the Joint Action on Rare Cancers (JARC) by suggesting solutions and collaboration among healthcare professionals through a multidisciplinary approach to guarantee expertise and sharing of best practices. The integration of rare cancers into national cancer plans by looking at affordable and sustainable access to treatment, innovation and psychological support, and increasing funds for rare cancer research to improve and facilitate country-level decisions on pricing and reimbursement. The working group was also involved in identifying national Health Care Providers (HCPs) for rare cancers in each EU country through ERN-EURACAN.

The WGRC members  consists of over 60 patient organisations across Europe and is comprised of ECPC members and external organisations with an interest in rare cancers. ECPC invites patient experts, members and non-member organisations with a shared interest in rare cancers to join the working group. To join contact max.schravendeel@ecpc.org/

And state your name and position, the name of your organisation with contact details and why your motivation for joining the WGRC.