2 Jobs for the Disability sector

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, pharmaceutical partners, clinical expert centres and other key stakeholders to support the Society’s objectives, influence policy and practice, and protect its professional reputation.
• Act as a visible and credible public voice to raise awareness, improve visibility, support, treatment access and outcomes for people affected by MPS, Fabry disease and related conditions.
• Collaborate with other rare disease bodies, patient organisations and other key audiences.
• Lead and empower the senior leadership team through effective delegation, early involvement in strategic discussions, clear accountability and support for individuals to flourish.
• Encourage an open, supportive work environment allowing creativity and building staff confidence.
• Help shape the future of the MPS Society.

About you

•  Self-motivated, with the drive to lead the organisation through a period of change and transition.
• Unquestionable probity and personal integrity, given the trust placed in the CEO by families, trustees and partners.
• Exemplary written and verbal communication skills, able to convey complex scientific and clinical information to audiences ranging from clinicians to families with no prior knowledge of MPS disorders.
• Strong self-awareness, with insight into their own leadership style and impact on others.
• Emotional resilience, able to sustain performance while supporting a community facing life limiting conditions.
• A collaborative and empowering leadership style, able to build trust, delegate effectively and help individuals across the organisation flourish.
• Genuine passion for the Society's mission, with a family and member-first ethos.
• Confidence to build relationships across a wide range of stakeholders, from beneficiaries and Trustees to politicians, media and pharmaceutical partners.
• A proactive, positive approach, comfortable reacting to change and organising their own work to meet deadlines.
• Confidence speaking publicly on behalf of the organisation and the people it represents.

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.

Benefits

Join us and you will be working for a caring charity offering:

• A competitive salary
• Generous annual leave
• Extra leave between Christmas and the New Year
• Contributory pension
• Life assurance (subject to the conditions of the scheme)
• Employee assistance programme offering support 24/7

Further information

The successful candidate must be eligible to work in the UK.

The main duties, responsibilities and requirements of this role can be viewed in the job description on our website.

Salary to be agreed depending on experience and will be pro-rata for part time hours.

This is an essential car user post. The applicant must hold a current UK driver’s licence, with no more than 6 points, have access to a car and be able and willing to drive UK wide as required.

This senior role requires flexibility in working hours and location.  It is primarily offered on a hybrid basis with a minimum of 2 days in our Amersham, Buckinghamshire, office each week. As part of the role, UK and overseas travel is necessary, which may on occasion include early morning and/or evening working and sometimes overnight stays. We have policies in place to ensure that any unsociable hours worked over the weekend are fairly compensated through TOIL.

This role will require an Enhanced Disclosure and Barring check (DBS) details of which can be found in the job description.

For an informal discussion about the role or the work of the MPS Society, please contact Dr Fiona Stewart.  Contact details can be found on the full job description. Kindly note, meetings with other relevant people will be available to shortlisted candidates at interview stage.