Building confidence, recognising ability and supporting capacity in young people, both at national and international level, is an important element of the work of IBE. This is highlighted as one of our aspirations in the Strategic Plan 2019-2023. Our goal is to improve unity, sustainability and communication, not only among IBE members, but also with IBE’s 138 chapters in 104 countries around the world.

The development of EpilepsyNext, a wide-ranging youth platform, represents a major element of our work programme over the coming years. EpilepsyNext is an exciting development that sets out to help young people grow in independence and develop the skills and qualities necessary to have a happy and productive life and, for some, to learn how to be effective leaders. It also challenges them to use these attributes for the betterment of themselves and the global epilepsy family.

The project consists of a number of modules. Each module can be used by the young adult as a stand-alone element. In addition, some young adults may decide to explore a number of modules as they grow in confidence and ability.

Aims and outcomes:

The Epilepsy Next platform aims to:

  • Enable young people to grow in confidence and to recognise their unique talents and abilities
  • Support capacity in young adults to make a difference in society through the development of communication and leadership skills
IBE - International Epilepsy Support

4 Modules

  • YEAH (Young Epilepsy Advocates Hub)

  • Young Adult Summit

  • Golden Light Awards

  • Youth Council

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.

IBE - International Epilepsy Support

Young Adult Summits

There is wide recognition amongst IBE’s chapters that young people are currently under-represented in their associations. This poses the risk of undermining the future potential of epilepsy associations or, at worst, put- ting their very future in jeopardy. It is also felt that the issues facing young people affected by epilepsy are not getting the public or political attention they should. Yet the diverse range of experience and the remarkable personal resilience that a large number of young people with epilepsy already demon- strate is going unnoticed, because many feel ill-equipped to report on their achievements.

Recognising this and in line with IBE’s goal ‘to provide resources for people with epilepsy and their families to maximise quality of life’, IBE is developing summit workshops especially for young adults with epilepsy either as stand- alone events or at the time of regional or international congresses. The objectives of these summits are:

  • To offer a platform for young people to voice the issues they face and raise awareness of these issues;
  • To provide young adults with epilepsy with the skills to become epilepsy advocates, in partnership with IBE’s chapters in Europe;
  • To hear how young people with epilepsy perceive patient organisations and how IBE, together with its chapters, can better adapt its operations to embrace the views and expectations of these young people with epilepsy;
  • To harness the outcomes of the workshop towards building a political campaign that could be brought to national policy makers;
  • To encourage participants to channel their results into a project that will address one of more of the issues that they believe should be addressed in order to improve life quality for those affected by epilepsy.

The ultimate aim is their involvement in developing IBE’s Youth Council.

United Through Epilepsy

IBE - International Epilepsy Support

San Jose, Costa Rica

Following public and health strategies, in order to reduce the global burden on epilepsy, a first workshop for young people with epilepsy was organised during
the 10th Latino American Epilepsy Congress in San Jose, Costa Rica (29th September to 2nd October 2018). The main objective was to give the opportunity to young people with epilepsy to share experiences with their peers from other Latin American countries and to learn more about their illness. Furthermore,
through the provision of education on epilepsy, to encourage them to be leaders in their national epilepsy associations.

For the selection of the candidates, ILAE and IBE invited Latin American and Caribbean chapters to submit applications. For the first event, 11 participants arrived from five different countries: Brazil, Chile, Costa Rica, Mexico and El Salvador. Support and guidance of the participants was provided during the entire schedule by two coordinators (a psychologist and a physician) on topics including basic information about epilepsy, diagnosis and current treatments.

Read the complete event report

Hear My Story

Dublin Workshop

Dublin, Ireland

Fifteen remarkable young adults from across Europe met in Dublin in October 2019 for a communications workshop entitled Hear My Story which was the inaugural event staged by IBE’s European Regional Executive Committee under the auspice of EpilepsyNext.

Chapters across Europe nominated their shining stars and, in the end, twelve countries were represented: Austria, Croatia, Cyprus, Denmark, England, Finland, Germany, Ireland, Italy, Norway, Scotland and Slovenia.

Bringing awareness to important issues such as the right to work, discrimination, social exclusion, access to treatments and fighting stigma, the opportunity to network and to work together on projects, as well as to get inspired were recognized as key factors for the group’s attendance.

Read the complete event report


Golden Light Awards

The Golden Light award honours young people with epilepsy who have been a ‘shining light’ for others and deserving of recognition. The awards recognise the fact that people with epilepsy should not be defined by their condition but, instead, embrace the call of IBE to ‘bring epilepsy out of the shadows and into the light’. Each bestowing of awards provides IBE with new opportunities to identify young people who have the po- tential to become future leaders in their own communities and as members of the IBE Youth Council.

First introduced in 2004, the awards were originally presented at each Asian & Oceanian EpilepSy congress. In 2019, the first International Golden Light awards were presented to eight recipients durIng the 33rd International Epilepsy Congress in Bangkok, each of whom presented their personal story of living with epi- lepsy during an extremely successful and moving forum. The enthusiasm of the awardees and their interest in remaining involved in IBE was the hoped-for result. Many of the young adults are now regular contribu- tors to IBE activities, such as International Epilepsy Day, and will be invited to join the planned Youth Council.

Further information

Youth Council

IBE recognises the importance of empowering young people with epilepsy to influence and inform the decisions that affect their lives. To this end, through the development of a Youth Council, support will be provided to young adults to get involved in their local epilepsy communities as well as at an international level, to ensure that their views are recognised and taken on board.

The IBE Youth Council plans to be the voice of young people affected by epilepsy. It will provide a platform to encourage their engagement in IBE issues and ensure their democratic participation in discussion and decision-taking on issues that directly affect them. The council will focus its work on youth policy matters within IBE, representing the views and opinions of young people affected by epilepsy. It will assist IBE in supporting self-empowerment in young people affected by epilepsy to participate actively in society, and in campaigning on issues that are important to young people with epilepsy in order to improve their own lives and to achieve their fullest potential as equal citizens.

Further information

Become an IBE Chapter

Read More