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What is the International Bureau for Epilepsy (IBE)?
The International Bureau for Epilepsy (IBE) is an international organisation of laypeople and professionals focused on the non-medical aspects of epilepsy—the social, policy, rights and everyday-living side rather than clinical treatment. Its site presents it as a hub for advocacy and community: current items cover a European Epilepsy Summit, a rights charter for rare and complex epilepsies, a European Epilepsy Congress presence, a Latin American awareness-week push and a global policy advocacy report launched at the World Health Assembly.
What that means in practice
- For people with epilepsy and families: a route into patient organisations and rights-focused campaigns, such as the continuity-of-care charter setting out ten rights for people with rare and complex epilepsies.
- For national associations: a platform for shared advocacy positions and cross-border events.
- For policymakers and clinicians: evidence-to-action convenings, like the Brussels summit bringing patients, clinicians, researchers and decision-makers together.
Two practical cautions. First, the homepage carries a warning about phishing emails impersonating IBE Executive Committee members—if you receive an uninvited message claiming to be from IBE, verify it through official channels before responding. Second, IBE is not a medical advice service; for diagnosis or treatment questions, a clinician is the right contact.
A useful next step: if you run or belong to a patient association, browse the news and events sections to see which campaigns match your national priorities, then check whether your organisation is listed among members before reaching out.
How can someone with epilepsy or a family member find support through IBE's member associations?
Start by using IBE's member association network as a routing service rather than a first-stop helpdesk: IBE describes itself as an organisation of laypeople and professionals focused on the non-medical aspects of epilepsy, and its national member associations are typically the bodies that run local support groups, helplines and family programmes. The practical path is to identify your country's association, then ask it directly what it offers families.
A workable sequence
- Check IBE's membership listings on International Bureau for Epilepsy to find the association for your country. If none is listed, ask IBE which regional body covers you.
- Contact the national association with a specific request: parent support groups, youth activities, school liaison, employment advice, or help understanding appointments. Vague enquiries get vague replies.
- Ask about language and format — many associations run phone lines, in-person branches and online groups, and availability varies widely by country.
- Use IBE's policy work as background, not as casework. Its news covers advocacy topics such as a rights charter on continuity of care for rare and complex epilepsies and a global policy advocacy report launched at the World Health Assembly; these help you frame questions about care coordination but won't resolve an individual case.
Whose experience counts
IBE's own pages report organisational activity — summits, congress presence, regional advocacy — not individual family outcomes. Treat those items as evidence of where the network is active, and treat what a national association tells you about its own services as the more useful signal. My practical reading: the value of a lay-led association for a family lies in peer contact and navigation help, while clinical decisions stay with your treating team.
Choosing between routes
| Route | Best for | Trade-off |
|---|---|---|
| National IBE member association | Local groups, family peer support, practical navigation | Depth of service varies greatly by country |
| Regional IBE bodies (e.g. IBE Africa) | Finding contacts where national groups are thin | Less direct day-to-day support |
| Clinician or epilepsy nurse | Medication, seizures, safety | Not designed for social or school issues |
| Condition-specific groups for rare epilepsies | Continuity-of-care and complex needs | Narrower audience, fewer local branches |
As a next step, draft a two-line message naming your situation and the single thing you need — for example, "Parent of a newly diagnosed 9-year-old; looking for a local family group and advice on talking to the school" — and send it to your country's association. If you get no reply within a couple of weeks, follow up with IBE's secretariat and ask for an alternative contact.
What does the IBE do to influence epilepsy policy at the World Health Assembly and other global bodies?
The IBE works to influence epilepsy policy through advocacy reports, rights charters and coordinated engagement with policymakers and global health bodies. Its page evidence shows this most concretely at the World Health Assembly, where the organisation launched a new global policy advocacy report, and through a rights charter setting out ten rights for better continuity of care for people with rare and complex epilepsies. It also convenes stakeholders—people with epilepsy, patient organisations, policymakers, clinicians and researchers—at events such as the European Epilepsy Summit 2026 in Brussels, described as a day for measuring progress, identifying gaps and turning evidence into action. Regional advocacy appears as well, for example a PARLASUR public hearing building momentum for a Latin American Epilepsy Awareness Week.
In practical terms, this is non-medical advocacy: framing epilepsy as a policy and rights issue, producing evidence-based recommendations, and using international meetings to press for implementation. For a reader deciding whether the site is useful, the test is whether you need advocacy materials, policy positions or campaign context rather than clinical guidance. A patient association preparing a national lobbying effort, for instance, could use the rights-charter framing on continuity of care and the summit's "evidence to action" model as templates for its own asks.
A useful next step is to read the global policy advocacy report and the rights charter alongside each other, then note which recommendations map onto your country's health system. For broader context, the International Bureau for Epilepsy is the primary source here; the International League Against Epilepsy, which organises the European Epilepsy Congress, can be found at International League Against Epilepsy, and the World Health Organization's epilepsy work at World Health Organization.
How can patient organisations join IBE or partner with it on advocacy campaigns?
For patient organisations, the practical route is to contact IBE directly through the organisation's own website and ask about membership versus campaign partnership, since the homepage itself describes IBE as "an organisation of laypersons and professionals interested in the non-medical aspects of epilepsy" but does not publish a step-by-step joining process. Advocacy collaboration is clearly part of how IBE works: its news stream covers coalition-style activity such as a new Rare and Complex Epilepsies Continuity of Care Rights Charter, a global policy advocacy report launched at the World Health Assembly, and a PARLASUR public hearing on a Latin American epilepsy awareness week.
Two different asks, two different fits
- Membership suits national or regional epilepsy associations that want a lasting relationship — shared policy positions, peer exchange with other patient groups, and visibility alongside IBE's events and statements. Expect to describe your organisation's legal status, geographic reach and current activities.
- Campaign partnership suits a group that wants to back or co-promote a specific initiative — a rights charter, an awareness week, a summit — without a full membership commitment. Here the useful opening is a short note naming the campaign, what your organisation can contribute (lived-experience voices, local media, translation, data from your community) and what you hope to gain.
A regional or condition-specific group with limited staff may find a single-campaign partnership a better first step than membership; a national association with an ongoing policy programme is better placed to take on membership obligations.
What to put in a first message
Write to the secretariat via the contact details on International Bureau for Epilepsy and keep it to one page: who you are, how many people you represent, the campaign or policy area you want to work on, and one concrete proposal. Reference an existing IBE workstream so the reader can route you quickly — for example, expressing interest in the continuity-of-care rights charter or in European Epilepsy Summit follow-up.
A caution worth passing on
IBE's homepage carries a warning about phishing emails that falsely claimed to come from its Executive Committee. Treat uninvited messages purporting to be from IBE leadership with suspicion, and verify any partnership approach through the official website rather than replying to the email.
For a broader view of the clinical and scientific side that IBE works alongside, the International League Against Epilepsy publishes congress and research information; regional umbrella bodies such as the IBE Europe are worth checking if your organisation works mainly at European level.
What are the Rare and Complex Epilepsies Continuity of Care Rights Charter and who does it protect?
The Rare and Complex Epilepsies Continuity of Care Rights Charter is a set of 10 rights intended to improve continuity of care for people living with rare and complex epilepsies. The International Bureau for Epilepsy (IBE) describes itself as part of the collaboration behind it, and the charter is presented as a rights-based framework rather than a clinical guideline: it sets out what people with these epilepsies should be able to expect as they move between services, clinicians and life stages.
Who it is meant to protect
- People with rare and complex epilepsies, including those whose condition requires ongoing specialist input and coordinated care over time.
- Their families and carers, who often carry the burden of navigating fragmented services.
- Patient organisations and advocates, who can use the charter as a reference point in policy and service discussions.
What "continuity of care" means here
The emphasis on continuity points to the practical gaps that matter most: transitions between child and adult services, handovers between specialists and primary care, and consistent access to treatment and support rather than repeated restarts. A charter of rights gives patients and families a shared language for raising those gaps with clinicians and policymakers.
How to use it
If you are a person with epilepsy, a carer or an advocate, the most useful next step is to read the 10 rights on International Bureau for Epilepsy and check them against your own care pathway — for example, what happens at a move from paediatric to adult services, or when a specialist leaves. Those specific gaps are the ones worth raising locally. For clinical guidance on diagnosis and treatment, the counterpart organisation is the International League Against Epilepsy at International League Against Epilepsy; the charter complements that medical guidance by focusing on rights and continuity rather than treatment decisions.
How can I attend or follow IBE events like the European Epilepsy Summit 2026 and the European Epilepsy Congress?
Start with the IBE's own event and news pages at International Bureau for Epilepsy (IBE): the European Epilepsy Summit 2026 is listed there as an IBE event in Brussels on 4 November 2026, bringing together people with epilepsy, patient organisations, policymakers, clinicians and researchers. The same page carries IBE's notices about its presence at the 16th European Epilepsy Congress in Athens (5–9 September 2026). Practical routes differ between the two:
- European Epilepsy Summit 2026 (IBE-organised): treat the IBE event listing as the starting point. Look for a registration, programme or contact link on the event post, and check back as the date approaches, since practical details are often added closer to the event.
- European Epilepsy Congress (organised by ILAE): registration, abstract submission and the scientific programme are handled by the congress organiser, not IBE. Use IBE's news item to see what IBE is doing there, then go to the congress's official site for attendance. The International League Against Epilepsy's own site, International League Against Epilepsy, is the authoritative place for congress logistics.
If you cannot travel
Follow IBE's news and gallery posts for outcomes, statements and reports from events you miss. For example, the page highlights a new Rare and Complex Epilepsies Continuity of Care Rights Charter and a global policy advocacy report launched at the World Health Assembly. These are useful if your goal is to cite IBE's positions in advocacy work rather than to attend in person.
A concrete reader scenario
A parent who is a volunteer in a national epilepsy association could use the Summit listing to identify the Brussels date, check whether patient organisations can send delegates, and prepare a short briefing on continuity-of-care gaps to raise there. Separately, a clinician-researcher interested in the scientific programme would register through the congress organiser and use IBE's page only to find IBE-led sessions and side events.
Decision criterion
Choose the Summit if your interest is policy, advocacy and lived experience; choose the Congress if your interest is clinical and research content. In both cases, confirm dates, venue and registration on the official organiser's page before booking travel, and be cautious with uninvited emails claiming to come from IBE committee members—the site itself warns about phishing scams targeting patient associations.
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