MPS Society UK, here for those with rare diseases
Chief Executive Officer
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Job Title: Chief Executive Officer
Reporting to: Chair of the Board of Trustees
Hours: 35 hours per week (part time may be considered for the right candidate). Flexible to meet the needs of the organisation
Location: Amersham, Buckinghamshire / hybrid (2 days a week in the office). Flexible to meet the needs of the organisation
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.
Why join us
- A close-knit, values-led culture. With just over thirty staff across the Society and RDRP combined, this is a place where the CEO can know the team personally, work closely with families day-to-day, and see the direct results of decisions rather than managing at a distance through layers of bureaucracy.
- Genuine autonomy to shape direction. The Board is explicitly looking to the new CEO to bring fresh thinking on technology, AI, and digital tools, and to give real freedom to modernise fundraising, services, and engagement rather than simply maintaining what already exists.
- A stable foundation to build from over forty years of track record, trusted relationships and a strong national reputation mean the incoming CEO can focus energy on vision and growth rather than firefighting or rebuilding credibility from scratch.
- Proximity to cutting-edge science: the Society's close relationship with RDRP gives the CEO regular exposure to advances in rare disease research and treatment access, while day-to-day research leadership sits with the RDRP Managing Director, allowing the CEO to focus on strategy, people and sustainability.
- A high-visibility, high-influence platform. Regular contact with government, pharmaceutical companies, clinicians and international rare disease bodies offers strong opportunities to build a public profile and personal network well beyond the charity sector.
- A team that already shares the mission. Staff are described as passionate about the Society's aims, and as having a family-first ethos, so the new CEO inherits a culture to lead and empower rather than one that needs to be built from the ground up.
- Work with a different kind of return. Beyond salary and career progression, this role offers the less tangible reward of knowing that strategic and financial decisions translate, into better support for families facing some of the rarest conditions in the country.
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Key Responsibilities
Strategy & Policy
- Define and deliver the Society’s strategic vision and refreshed three-year operating plan, ensuring clear priorities, measurable progress, strong financial sustainability, income diversification and effective reporting to Trustees.
- Provide strategic oversight across communications, fundraising and engagement activity, ensuring internal information flow is strong and that these areas are aligned, mutually reinforcing and focused on the Society’s long-term objectives.
- Accountable for maintaining knowledge of all appropriate regulatory legislation while keeping Trustees informed of information relevant to the operational running and strategic direction of the Society.
- Oversee the development, implementation and Board approval of MPS Society policies, while fulfilling the role of Data Protection Officer.
Leadership
- Work with the Board, Senior Leadership Team and RDRP Managing Director to ensure clear governance, assurance, communication, decision-making, and effective operational alignment between the MPS Society and RDRP.
- Lead and empower the Senior Leadership Team through effective delegation, early involvement in strategic discussions, clear accountability and support for individuals to flourish.
- Ensure that appropriate systems, policies and management arrangements are in place to support effective organisational performance, risk management and regulatory compliance.
- Foster a forward-thinking, creative and learning-oriented culture that supports flexibility, continuous improvement, role development and opportunities for staff.
- Balance growth, innovation and external influence with the Society’s disease-specific expertise, specialist identity and trusted connection with the MPS community.
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Membership
- Ensure the Society continues to meet the evolving needs of members through a trusted, community-centred and specialist approach, with the patient and family voice at the heart of strategy, service design and decision-making.
- Anticipate and respond to emerging needs across the life course, including transition to adult services and later life care, as advances in treatment mean more people are living longer with rare conditions.
External Engagement / Collaboration
- Build and maintain senior-level relationships with statutory bodies, government agencies, pharmaceutical partners, clinical expert centres and other key stakeholders to support the Society’s objectives, influence policy and practice, and protect its professional reputation.
- Strengthen the Society’s role as a trusted partner within the healthcare system, using external partnerships and policy influence to improve visibility, support, treatment access and outcomes for people affected by MPS, Fabry disease and related conditions.
- Maintain strong horizon scanning across rare disease policy, diagnosis, treatment development, research, data and access pathways, ensuring the Society is prepared to respond to emerging opportunities and risks.
- Champion the responsible use of evidence, patient insight, real-world data and patient-reported outcomes to support service development, research, policy influence, treatment access and organisational decision-making.
- Responsible for leading on and driving political advocacy both within the UK and internationally, where applicable.
- Champion the MPS Society in the UK and overseas, building awareness of Fabry, MPS and related diseases through engagement with rare disease bodies, patient organisations and other key audiences.
- Ensure the Society can demonstrate its impact and value to members, funders, partners and stakeholders across charitable services, advocacy, research and external partnerships.
- Accountable for all communications with the press and agreeing all press statements.
- Governance work in partnership with the Chair and Board of Trustees to ensure effective governance, strategic oversight, risk management and regulatory compliance.
- Ensure Trustees receive timely, accurate and appropriate information to support effective decision-making.
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