New Hashtag Created: To amplify the voices of lived experience during IEC we registered a dedicated hashtag, #EpilepsyVoices at Symplur’s Healthcare Hashtag Project, to use alongside the official #IEC2023 hashtag. We plan to continue to use this hashtag on our social media channels when sharing the voice of the person with lived experience of epilepsy and encourage you to do the same.
Lived Experience Speakers: A key focus of this year’s Congress was the inclusion of speakers with lived experience. These speakers grounded the Congress in real-life experiences, reminding attendees that every data point represents a life, a family, and a unique journey.
Citizen Journalists: This innovative addition infused IEC 2023 with fresh perspectives. The participation of citizen journalists brought the voice of the people with direct experience of epilepsy to the forefront. Keep an eye on our social media channels over the coming days and weeks as we share video interviews conducted at IEC by two of our intrepid journalists, Anita Mago and Jessie Nyirenda.
Public Sessions: This year an exciting development was the inclusion of a special public programme held over two evenings. The programme featured talks by renowned epilepsy experts who presented their research and findings in a way that was accessible to everyone.
Youth Summit: A group of young people (18-35) living with epilepsy came to Dublin to participate in our first-ever Epilepsy Youth Summit. The aim was to connect young people living with epilepsy to share their experiences and explore common challenges. Sessions also focused on building leadership skills, learning more about epilepsy research, engaging in personal development activities, and networking with each other and other stakeholders. The feedback was overwhelmingly positive, with many attendees declaring it to be a life-changing experience!
Golden Light Awards: Three inspiring young people – from Brazil, Tanzania and Ireland – were selected to receive this year’s award, from over 20 nominations received from across the world. The Awards are an opportunity to recognise and reward outstanding young people who live with epilepsy or care for a person with epilepsy.
Social Accomplishment Award: This is awarded to an individual to recognise his or her outstanding personal contribution to activities that have resulted in a significant advance in the social well-being and or quality of life of people with epilepsy. This year the Award was given to 24-year-old Cassidy Megan, from Nova Scotia, Canada. Cassidy is the founder of Purple Day an epilepsy awareness day that is recognized and celebrated globally every year on March 26. Cassidy is also a member of IBE’s Global Youth Team and played an active part in the Youth Summit at IEC.
The Curse of Stigma Preview Screening: We attended the first screening of an exclusive preview of the documentary film The Curse of Stigma – a powerful and intimate documentary film that tells the story of two African women living with epilepsy and the pain, isolation, and harm they have suffered because of discrimination and deeply embedded cultural beliefs. Their ultimate understanding of epilepsy as a treatable condition leads them to better health and brighter futures. By telling their truth, and the truth about epilepsy, they overcome shame – the ultimate curse of epilepsy stigma.
To dive deeper into these highlights and explore the congress in greater detail, we invite you to download our full report, which provides insights, quotes, and an array of images of the event’s key moments.
