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.

What ECPC does

WGRC representatives provide the patient perspective on the Joint Action on Rare Cancers and discuss any topic relevant to rare cancers, notably to:

  • Raise awareness: disseminate information on rare cancers to the medical community to improve early, timely and correct diagnosis
  • Empower rare cancer patients: disseminate information on rare cancers to patients and provide Contact Points at the national level
  • Contribute to European Reference Networks (ERNs): disseminate information to the medical and non-medical community, ensuring patients are referred to centres of excellence
  • Integrate patient input into the Joint Action on Rare Cancers (JARC): provide solutions and ensure collaboration among healthcare professionals through a multidisciplinary approach to guarantee expertise and sharing of best practices
  • Incorporate rare cancers into national cancer plans: push for affordable and sustainable access to treatment, innovation and psychological support, and increase funds for RC research to improve and facilitate country-level decisions on pricing and reimbursement
  • Liaise locally to identify at least one Health Care Provider (HCP) for rare cancers in each EU country to coordinate with ERN-EURACAN

WGRC Membership

WGRC members are ECPC members (Full and Associate) and non-member organisations with an interest in rare cancers. At present, the WGRC is comprised of over 60 patient organisations across Europe.

  • WGRC Chair:Jana Pelouchova, ECPC Past General Secretary and RC Expert
  • WGRC Vice-Chairs: Laura D’Avanzo, Glioblastoma Multiforme – Cancro al Cervello, Italy and Mary Skehan, Slainte an Chlair, Ireland
  • WGRC Coordinator: Klevisa Ceka, ECPC Health and Research Programmes


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).

Kindly contact Isabelle Manneh, Head of Health and Research Programmes, stating:

  • your name and position
  • your organisation and contact details
  • your interest in joining the WGRC

A confirmation email will be sent shortly after the application has been submitted.

Become a Member

Click here to download membership form