Benefits of becoming an IBE Chapter
The member organisations of IBE are known as its chapters.
IBE offers three types of membership: Full Chapter, Associate Chapter & Affiliate Chapter.
All Chapters have constitutional rights to:
- Receive such support as can reasonably be expected from the IBE for the endeavours undertaken by the Chapter to serve the unmet needs of all people with, and affected by, epilepsy.
- Receive such information as can reasonably be supplied to make an informed decision on matters affecting the IBE.
- Vote in ballots, polls and elections conducted in the course of IBE business (full/associate chapters only).
- Be a Chapter of an IBE Regional Committee and to participate in its affairs and activities.
- Advertise and promote their membership of the IBE.
- Setup a profile and engage on the IBE community engagement platform: The Knowledge Hub.
- Be invited to attend the regional chapter convention and engage in inter and intra-regional activities open to IBE chapter representatives.
In addition, Full and Associate Chapters have the right to be nominated for election to the International Executive Committee and relevant Regional Executive Committee and to vote in ballots, polls and elections conducted by IBE.
Being a member of IBE allows Chapters to:
- Be part of the largest global network of organisations supporting people with epilepsy in the world.
- Access peer to peer support and mentoring, training and capacity building initiatives, and inter and intra-regional networking opportunities.
- Join special interest groups to share best practice, and benefit from pooled resources and materials.
- Participate in IBE’s annual campaigns and awareness raising initiatives – such as International Epilepsy Day; with exclusive access to branded promotional assets and materials.
- Play an active part in IBE programmes and projects, such as Global Advocacy Actions, IBE-INVOLVE, international research, and more.
- Be involved in IBE’s Teams, Councils, and Committees.
- Get support to attend IBE’s global and regional chapter conventions, congresses, meetings and advocacy events.
- Use IBE to disseminate, amplify and/or endorse national work.
- Benefit from IBE’s collaborative partnerships including the World Health Organization (WHO), Economic & Social Council of the UN (ECOSOC), Conference on NGOs (CoNGO), European Federation of Neurological Associations (EFNA), European Patients Forum (EPF) and European Medicines Agency (EMA).
- Benefit from the close working relationship that exists between IBE and the International League Against Epilepsy (ILAE).
How to become an IBE Chapter: membership criteria
Full Chapter membership
Full Chapter Members are national organizations that serve the unmet needs of all people with, and affected by, epilepsy.
Full Chapter Members must ensure that people with, and affected by epilepsy, are central in the decision-making, strategy, and evaluation of the organization. This includes representation on the Full Chapter Member’s Board of Directors, or equivalent.
Full Chapter Members must be incorporated as a non-governmental/non-profit organisation, and be in good standing, within their country of incorporation.
Full Chapter Members must offer membership, or equivalent, to all eligible people or organisations within the country.
Full Chapter Members shall engage in at least two (2) of the following activities to remain in good standing:
- Provide reliable and evidence-based information and advice to people with epilepsy and those who care for them at a national level.
- Conduct awareness-raising activities and/or campaigns for – and with – people with, and affected by, epilepsy across different regions of the country.
- Engage in advocacy for – and with – people with, and affected by, epilepsy to influence policy and decision-making based on the needs and preferences of those with lived experience.
- Provide services and supports for people with, and affected by, epilepsy across different regions of the country.
- Lead, support and/or ensure the participation of people with, and affected by, epilepsy in research.
Full Chapter Members shall be voting members of IBE with one (1) full vote per Full Chapter Member.
Associate Chapter membership
Organizations that are not recommended for Full Chapter Membership, or that do not fully meet the criteria for Full Chapter Membership, may apply – or be considered – for Associate Chapter Membership.
- Associate Chapters may include:
- Organisations that are focussed on a specific sub-population of people with epilepsy.
- Organisations that only operate at a local or regional level within a country.
- Organisations that are a sub-entity of a larger institution.
- Organisations for healthcare professionals that conduct activities with, and for, people with and affected by epilepsy – in the absence of a dedicated national organisation for people with epilepsy/families e.g. ILAE chapters with a dedicated programme of activities for PWE.
Associate Chapter Members shall be voting members of IBE with a weighted vote of 20% of one full vote. However, the combined vote of Associate Chapter Members in one country should not exceed the total vote (1) of the Full Chapter Member in that country, so may be weighted downwardly.
Associate Chapter Membership shall entail all membership privileges.
Affiliate Chapter membership
Affiliate Chapter Members are those entities that:
- are not specifically working on epilepsy but have some initiatives of relevance; or
- are members of an existing IBE Full/Associate Chapter.
Affiliate Chapter Membership shall entail all membership privileges other than the right to vote.
How to become an IBE Chapter
Step 1: Review IBE’s key document
1.1. Please begin by reading the IBE membership criteria (outlined above and also in the IBE Chapter Code below) which can help you decide which category is most suitable for your organisation.
Step 2: Complete the online application
2.1. You’ll need to fill out this online form: https://www.surveymonkey.com/r/89XX75Y
- Upload all required documents.
- Submit the form once fully complete.
2.2. For your convenience, below is a PDF of all the questions (see downloads). This will help you preview the questions, so you can prepare the appropriate information before starting the online form.
2.3. Please note that the online form must be fully completed for your application to be considered.
- The information you provide is essential for reviewing your eligibility and determining the correct membership category.
- Your data will be stored securely. IBE uses SurveyMonkey (GDPR and HIPAA compliant) to collect responses.
- Your information will only be used for internal review and individual data will not be published.
2.4. If any part of the form is unclear or if you would like to be connected with a regional representative to assist with the application process, please reach out to us at [email protected] specifying the type of support you would need.
Step 3: Application review
3.1. IBE staff may contact you if we need clarification or additional information.
3.2. Your application will be reviewed by our Membership Committee and then by the International Executive Committee.
3.3. We’ll inform you of the outcome within an estimated 6 weeks of receiving your completed application.
Contact details for IBE Chapters
To contact an IBE Chapter directly, please choose from the following regions below.
If the contact details are not listed, please contact us at [email protected]