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What can patients, carers and patient organisation representatives expect when attending a health conference and how can they contribute meaningfully?
Our next EPAP Live webinar will explore these questions on 24 June 2025, from 12:30 to 13:30 CEST. The session will focus on helping people with lived experience feel confident and prepared to participate in health conferences and understand how to advocate effectively for their condition or community.
Anyone with an interest in patient advocacy is encouraged to attend this event. Invited speakers will include a healthcare professional, a patient organisation representative and a patient, all of whom have attended conferences and played active roles in shaping discussions. The event will provide practical insights into patient involvement and advocacy in professional health settings.
This informative and interactive event is part of a series of live webinars related to the European Patient Ambassador Programme (EPAP). EPAP is a free, online, self-learning programme that introduces patients and carers to some of the basic skills and knowledge needed to represent yourself and others successfully.
A live Q&A will follow the presentations to allow for questions and open discussion.
This event will be hosted by ELF’s Patient Input team. We will be joined by speakers from the European Respiratory Society, our Patient Organisation Network and our Patient Advisory Groups (PAGs).
Susanne is an assistant professor in the Department of Paediatric Pulmonology and Pulmonary Medicine at the University of Amsterdam.
She is also a respiratory researcher and clinical epidemiologist, specialising in respiratory outcomes in children and adults. She obtained her MSc in Oncology from VU University Medical Center (VUMC) and completed a PhD in Pharmaceutical Sciences at Utrecht University, focusing on treatment response. After this, she pursued a postdoctoral degree in epidemiology and is currently an Assistant Professor at the Department of Pediatric Pulmonology and the Department of Pulmonary Medicine at Amsterdam UMC, University of Amsterdam, the Netherlands. She has supervised nine PhD students to completion.
Hilary Hodge is the patient chair of the SHARP clinical research collaboration, which focuses on improving outcomes for people living with severe asthma. She has attended several conferences in her role, where she highlights the patients perspective to professionals.
Hilary also specialises in parenting with a chronic condition and educates other parents about how they can speak to children about living with these conditions. She lives in Loire Valley, France with her husband and son.
Jean-Michel is the chair of the ELF Mental health working group and president of the French Association for Pulmonary Fibrosis. He is also a member of the ELF Patient Advisory Committee (PAC) and has been a speaker at the ERS Congress.
Jean-Michel is keen to ensure that patient's voices are represented at health conferences and used to shape future research.
ELF does not charge for its events and materials. We want to make sure they are available to anybody who wishes to join or use them. To ensure we can keep doing this we ask that those who can afford to pay to make a donation. We are grateful to everyone who supports us in this way and helps lung health patients to understand more about their condition and have their voices heard.
