In an historic event, International Bureau for Epilepsy members gathered in Rome, Italy from September 11-13, 2024 for the first ever IBE Europe Chapter Convention.

The rich programme created by IBE CEO, Donna Walsh and IBE Head of Engagement, Claire Nolan, included a variety of topics and also multiple formats from presentations to small groups to surveys, which kept all the participants engaged and involved.

Leaders in the field of epilepsy and epilepsy advocacy were there to share, including IBE President, Dr Francesca Sofia and IBE Vice-President, European Region, Elvira Vacas Montero.

One of the focus questions was, “How do we address the unmet everyday needs of people with epilepsy in Europe?”  The World Cafe format allowed participation in three out of five domains with the topics of “Work and Income, Learning and Education, Sexual and Reproductive Health, Mental Health and Wellbeing, and Knowledge, Information and Advice.” Rather than being a presentation, it was a facilitated discussion around tables, gleaning from the valuable insights of the various lived experiences represented.

Another main topic was the WHO Intersectoral Global Action Plan (IGAP) on Epilepsy and other Neurological Disorders.  Dr Neerja Chowdhary, Technical Officer, Brain Health Unit, of the World Health Organisation sent a video message to share her insights.

A panel discussion was also led on “How do we leverage new global and European initiatives on epilepsy, neurology and Non-Communicable Diseases for our community?”

IBE CEO, Donna Walsh served as the moderator and participants included:

• Prof. Alla Guekht, President Elect, International League Against Epilepsy
• Frederic Destrebecq, Executive Director, European Brain Council (via Zoom)
• Dr Orla Galvin, Executive Director, European Federation of Neurological Associations
• Claudia Louati, Head of Policy, European Patients’ Forum
• Barbara Nadine De Gol, Global Patient Advocacy Specialist, Angelini
• Andrea Tomasini, Member, IBE Community Council

An Idea Exchange Forum gave participants the opportunity to hear about the EpiAlliance – IGAP implementation plan in Spain in a presentation given by IBE Vice-President, European Region, Elvira Vacas Montero and Dr José M Serratosa, Co-Directors of EpiAlliance.

This was followed by another practical exercise that took part over the two days in a design thinking workshop method, facilitated by Ernst and Young and utilizing Slido and small groups.  In two separate instances, the major concerns and priorities of people affected by epilepsy, both medical and non-medical, were identified and prioritized.  Later concrete action plans were brainstormed and given to IBE to help direct future goals.

It was encouraging to hear from Prof. Matthew Walker, Chair, Executive Board, ILAE-Europe, as he shared about “What’s in the pipeline?” This included an overview of innovative treatments and research underway from a biological perspective.

He was followed by another Ideas Exchange Forum that highlighted how people with epilepsy can participate in, shape, and fund and lead out in research.

IBE CEO, Donna Walsh served as the moderator once again and panellists included:

• Biohaven: Ricardo Garvao, VP, Corporate Operations
• Epilepsy Research Institute: Rosemarie Pardington, Chief Executive
• Epilepsy Ireland: Peter Murphy, CEO
• EpilepsieNL: Laura M’Rabet, MT member Knowledge and Innovation

Another panel discussion moderated by IBE CEO, Donna Walsh focused on “How do we accelerate research and innovation for epilepsy in Europe?”

Panellists included:

• Prof. Matthew Walker, Chair, Executive Board, ILAE-Europe
• Dr Francesca Sofia, President, International Bureau for Epilepsy
• Frederic Destrebecq, Executive Director, European Brain Council (via Zoom)
• Rosemarie Pardington, Chief Executive, Epilepsy Research Institute
• Lisa Moore-Ramdin, Senior Director, Global Medical Affairs Lead, Jazz Pharmaceuticals
• Andrea L. Wilkinson, Global Head of Epilepsy Patient Engagement Strategy, UCB
• Dzenana Rustempasic, Member, IBE Community Council

While all of the speakers, discussions, small groups and excercises were very helpful and needed, undoubtedly the time getting to know one another in person instead of through online means was also invaluable.  Time will only tell what types of collaborations and progress will be made for people affected by epilepsy from the friendships begun through their IBE Europe Connection.