IBE Youth Programme
The IBE Youth Programme aims to connect young people with epilepsy around the world, raise awareness of epilepsy, develop young epilepsy advocates, and enable them to partner with those working across epilepsy research, healthcare, and policy making. The programme focuses on IBE’s strategic impact goal of empowering and amplifying the voice of people with epilepsy.
At the core of the Youth Programme is IBE’s Global Youth Team, who are a dynamic team of young advocates living with epilepsy from all over the world. The team drives IBE’s impact in various capacities, from their contributions to some of IBE’s flagship initiatives, to social media advocacy, to organising, leading, and facilitating engagement activities like workshops and webinars. They contribute their invaluable perspectives to IBE projects as well as those of our collaborators, ensuring epilepsy-focused research and initiatives involve and engage people with lived experience. The team also offers space for young people with epilepsy to connect, talk, and support each other through their shared and individual experiences.
he IBE Youth Programme aims to connect young people with epilepsy around the world, raise awareness of epilepsy, develop young epilepsy advocates and enable them to partner with those working across epilepsy research, healthcare and policy making.
Co-Chair
Co-Chair
YEAH – Young Epilepsy Advocates Hub
The teenage years and early adulthood can be a traumatic and challenging time for many people. Peer pressure, the wish to be the same and yet different, changing hormones and developing bodies can all exert emotional influences. For young people with epilepsy, the desire to be the same as their peers- to be able to stay out late and party until dawn, to drink alcohol, to go on dates, to enjoy nightclubs with flashing lights, can bring extra stress.
YEAH (Young Epilepsy Advocates Hub) recognises the value of peer support at this challenging time in young people’s lives. Via a private Facebook Group, this project represents a safe online environment for young people with epilepsy to meet and discuss issues of relevance to them – not only those that might relate to epilepsy, but also their day to day activities and interests. The upper age-limit is 30 years.
Global Youth Regional Workshops – Express Your Interest Now!
The International Bureau for Epilepsy’s Global Youth Team is excited to announce a series of seven virtual workshops taking place this Autumn, specifically designed for young people aged 18-35 with epilepsy.
The purpose of the workshops will be to explore the emerging themes of the ongoing Global Epilepsy Needs Survey (GENS) as they relate specifically to young adults with epilepsy, and with a particular focus on regional needs and challenges. It will be an opportunity to discuss and explore the young people’s personal experiences, and priorities, and brainstorm how IBE and its chapters can address them.
When and where will the workshops take place?
Workshops will be held virtually from late October to mid-November. Specific dates will depend on your region. Workshops will be offered in:
- English: North America, Europe, South East Asia, Western Pacific, Africa, and Eastern Mediterranean regions.
- Spanish and Portuguese: Latin American region.
How can I participate?
To express your interest and find out the date of your region’s workshop, please complete the expression of interest form below:
- English: IBE Regional Workshop Interest Form
We look forward to connecting with you and hearing your valuable insights!
When and where will the workshops take place?
Workshops will be held virtually from late October to mid-November. Specific dates will depend on your region. Workshops will be offered in:
- English: North America, Europe, South East Asia, Western Pacific, Africa, and Eastern Mediterranean regions.
- Spanish and Portuguese: Latin American region.
How can I participate?
To express your interest and find out the date of your region’s workshop, please complete the expression of interest form below:
- English: IBE Regional Workshop Interest Form
We look forward to connecting with you and hearing your valuable insights!
Publications
Exploring Epilepsy and the Family
A Report from the Global Youth Team of the International Bureau for Epilepsy [IBE] on International Day of Families 2023.
For young people with epilepsy, the role of family is crucial to support their development and allow them to reach their true potential. Ahead of the UN International Day of Families, the IBE Global Youth Team asked their families about their experiences supporting loved ones with epilepsy. Youth Team members then produced a report outlining their findings and making some important recommendations for the epilepsy community and beyond.
We invite you to download this article and get in touch with your own work or research on this topic, or any experiences, comments or reflections on this work ([email protected]).
Global Youth Summit Report 2023
The Global Youth Summit took place over 2.5 days during the 35th International Epilepsy Congress in Dublin, Ireland. It gathered young individuals aged 19–36 from ten countries, including the UK (England and Scotland), Ireland, Germany, Uganda, El Salvador, Chile, the USA, Canada, and Australia. The participants took part in interactive workshops, discussions, and networking events, exploring issues like healthcare access, education, employment, and social inclusion.
The release of this report not only documents the outcomes of the summit but also serves as a catalyst for action and change. It calls upon stakeholders to heed the voices of young people with epilepsy, engage them as partners in decision-making processes, and work towards building a more inclusive and supportive society for all.
