"Nothing about us without us!" ECPC
The European Cancer Patient Coalition (ECPC) is honoured to be 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 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.
- 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 Projects Coordinator
- 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 the 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.
- Join WGRC
- 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 coming soon..
- WGRC Meetings
WGRC GoToMeeting March 2017
WGRC Meeting June 2017
- 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:
- ECPC Merkel cell carcinoma patient guide
- ESMO acute myeloblastic leukaemia patient guide
- ESMO bone sarcoma patient guide
- ESMO chronic myeloid leukaemia patient guide
- ESMO follicular lymphoma patient guide
- ESMO glioma patient guide
- ESMO head and neck cancer patient guide
- ESMO oesophageal cancer patient guide
- ESMO soft tissue sarcoma patient guide
- Related News
JARC WP2 KickOff coming soon..
JARC WP7 KickOff coming soon..