SERSA’s governance model includes Presidency, Board Representation, Scientific Advisory Board and working groups.

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Presidency: Responsible for strategic direction, operational management, and implementation of alliance priorities.

 

The Presidency provides strategic leadership and represents SLC6A1 Europe, Research and Support Alliance (SERSA) at the European and international levels. It is responsible for setting long-term priorities, ensuring alignment with the mission, and overseeing implementation of strategic goals. The Presidency acts as the primary point of coordination between national organisations, scientific partners, and external stakeholders. It ensures that the alliance operates with transparency, integrity, and patient-centred focus.

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Board Representation: Representatives from participating national organisations provide oversight and ensure that decision-making reflects the broader European community.

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Board Representatives are appointed by participating national SLC6A1 organisations and ensure that each country has a voice within the alliance. They contribute to strategic decision-making, share national perspectives, and help align European initiatives with local realities. This structure preserves national autonomy while strengthening collective action. Through the Board, SERSA remains grounded in the needs of families across Europe.

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Scientific Advisory Board (SAB): An independent group of clinicians, researchers, and scientific experts who

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1) Provide guidance on research priorities

2) Review scientific partnerships

3) Ensure evidence-based decision-making

4) Safeguard scientific integrity

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The Scientific Advisory Board (SAB) is composed of independent clinicians, researchers, and experts in relevant fields such as epilepsy, neurogenetics, translational science, and clinical trial design. The SAB provides evidence-based guidance on research priorities, partnerships, and emerging therapeutic strategies. It ensures scientific rigor, objectivity, and ethical standards in all research-related activities. The SAB provides oversight on research priorities, partnership evaluation, and scientific integrity.

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Working Groups: Thematic working groups may be established for:

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1) Registry and data strategy

2) Clinical trial readiness

3) Family resources and education

4) Regulatory and policy engagement

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Working Groups are thematic teams established to advance specific strategic areas such as registry development, clinical trial readiness, family resources, regulatory engagement, or communications. These groups bring together representatives from national organisations, subject-matter experts, and, where appropriate, external advisors. They translate strategy into operational action and ensure progress toward measurable goals. Working Groups allow SERSA to remain agile, collaborative, and implementation-focused.