Get Involved
Whether you can offer a few minutes or a more regular commitment, there is a place for you at the Xia-Gibbs Syndrome UK Foundation. We welcome all levels of involvement — from attending occasional meetings or supporting fundraising activities, to sharing professional expertise or taking on a more active role.
Every contribution matters, and we value both occasional supporters and those engaged in day-to-day efforts. However you choose to support our work, we would be pleased to welcome you into the community.
Current Volunteer Opportunities
Governance
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Trustees provide strategic leadership and ensure that the charity operates within its legal and charitable obligations. They contribute to long-term planning, risk management and overall accountability. Trustees review policies, attend regular meetings and help guide decisions that shape the charity’s direction and future sustainability.
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This role ensures accurate financial management and supports the charity’s compliance with regulatory and legal standards. Responsibilities include budgeting, tracking income and expenditure, preparing financial reports, and maintaining transparent records. The role also advises on financial risks and ensures that all funds are used appropriately and effectively.
Operations and Delivery
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Coordinates planning and delivery across the charity’s key initiatives. Works with volunteers, trustees and external partners to keep activities on track, monitor progress, and support project outcomes. Helps ensure smooth operations and measurable impact across programmes.
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A qualified healthcare professional who provides expert guidance on care, therapies and clinical best practice for Xia-Gibbs Syndrome. May support resource development, advise on policy, and help build relationships with clinicians and researchers in the UK and abroad.
Family Engagement and Outreach
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Acts as the first point of contact for new families. Offers a welcoming introduction to the charity, explains available support, and provides guidance on navigating services and funding. Helps families feel informed, connected and supported from the start.
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Oversees the charity’s public messaging across all channels, including website, social media and printed materials. Ensures content is consistent, accessible and aligned with the charity’s tone and values. Supports campaigns, awareness efforts and community engagement.
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Builds relationships with funders, donors and corporate partners. Supports fundraising activities, develops funding proposals and helps secure income to sustain and grow the charity’s work. Represents the charity externally and helps drive long-term financial resilience.