Chief Executive Officer

An exciting opportunity! This is a rare and genuinely exciting opportunity to lead the UK''s only dedicated charity supporting children, adults and families affected by MPS, Fabry disease and related lysosomal storage disorders. Following the current Chief Executive''s planned move to become Managing Director of Rare Disease Research Partners (RDRP) in January 2027, the incoming CEO will take the helm of an organisation with over forty years of history, a trusted national reputation and a growing role on the international rare disease stage. The successful candidate will shape the strategic vision for more than 1,800 families, oversee the close partnership between the Society and its research subsidiary RDRP, and champion the patient and family ethos that sits at the heart of the organisation''s work. It is an opportunity to combine ambitious strategic leadership with deeply meaningful, human impact, working alongside a committed Board, Senior Leadership Team and wider community of clinicians, researchers and pharmaceutical partners. As our next Chief Executive, you will Define and deliver the MPS Society''s strategic vision. Provide confident oversight of governance, finance, compliance and reporting. Effectively manage the operational alignment between the MPS Society and RDRP. Always keep the members and family voice at the heart of strategy, service design and decision-making. Build and maintain senior-level relationships with statutory bodies, government agencies, ..... full job details .....