“Nothing about us without us!” ECPC
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 Head of Health and Research Programmes
- 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 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
Kindly contact Isabelle Manneh-Vangramberen, Head of Health and Research Programmes stating:
- 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 Terms of Reference (ToRs)
WGRC Meeting Minutes October 2016
WGRC Meetings
WGRC Meeting June 2018
WGRC Meeting June 2017
WGRC Meeting October 2016
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
EU Joint Actions
Joint Action on Rare Cancers (JARC)
Contact Points
ECPC: Isabelle Manneh-Vangramberen, ECPC Head of Health and Research Programmes
Project Coordinator: Paolo Casaliaolo Casali, Milan Instituto Nazionale Tumori
Funding
The Joint Action is funded by the EU Third Health Programme 2014-2020, Joint Action N° 724161.
Project Website
http://www.jointactionrarecancers.eu/
Related News
ECPC activities within RARECAREnet