Gilly Spurrier-Bernard

Co-Chair, European Cancer Organisation's Patient Advisory Committee
Chair, WECAN
Member, Melanoma Patient Network Europe

A Geologist/Environmental Scientist by training, she began in Advocacy when her husband became a stage 4 Melanoma Patient in 2008.

2014-Present - President of MelanomeFrance - a patient Association run by volunteer Patients/Carers that provides up to date information on Melanoma Disease, Treatments, Clinical trials, Health Systems, Side Effect management and survivorship, as well as support for patients and their families. Moderation of a Forum of >900 Francophone Patients/Carers. Contributions to HTA evaluations for the HAS (French Evaluator), Contribution to selection of INCa Funded Projects, Lobbying of Stakeholders for access to treatments and clinical research. Contribution to research projects into PROs, Microbiome, rare cancers.

2016-Present - Vice-president of Melanoma Patient Network Europe - Participation in several initiatives, (Horizon 2020, IMI Get real, PRO research, and several European Projects) Planning and running several Patient and Multi-stakeholder Congresses each year : European, Regional, National, special group (Rare Melanoma s and paediatric) and Pan-Cancer meetings. Meetings and Advisory boards with all stakeholders: Regulators, HTA, Industry, Clinicians and Health Economists.

2019-Present - Chair of WECAN - Co-ordinating and communicating the joint activities/initiatives of 22 Pan-Cancer umbrella Organizations – Planning and Contributing the annual WECAN Academy for Cancer Patient Advocates, In January 2020 planned and ran the first WECAN Science training for Cancer patient advocates

EUPATI fellow, Member of the European Cancer Organisation's Patient Advisory Committee, Project Partner on 2 Horizon 2020 Projects, Speaker at ESMO, the European Cancer Summit, EHA, several European Patient Conferences on topics from Fertility and Cancer, Combatting Pseudoscience, Immunotherapy Side effects, Value Frameworks and many more.

Contributing to several publications : The European Cancer Organisation Essential Requirement for Quality Cancer Care in Melanoma, ASCO Melanoma Treatment Guidelines, ESMO Patient Guide for Immunotherapy Side Effects.

She is passionate about patient education because well-informed patients are best equipped to lead the decision making in their treatment and hence cope better with their life as a melanoma patient/carer. She believes that Patient Advocates can drive better Patient relevant research through direct access to the primary data source and collaboration with other useful stakeholders.

Updated: August 2020