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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.
Please include your CV with a supporting statement of no more than 800 words. Your supporting statement should include an answer to the question below:
The MPS Society supports individuals and families affected by mucopolysaccharidoses (MPS) and related disorders. What interests you about coming to work in this area, and what motivates you to contribute to supporting individuals and families affected by these conditions?
To transform lives through specialist knowledge, support and advocacy, and research.
The client requests no contact from agencies or media sales.
Actively Interviewing
This organisation is scheduling interviews as applications come in. They're ready to hire as soon as they find the right person. Don't miss your opportunity, apply now!
About the role
The Motability Foundation is recruiting two Policy Managers to join its newly established policy team, which sits within the Communications department. These roles will lead discrete policy areas, develop robust policy positions, and support the Motability Foundation in improving transport accessibility for disabled people.
The Motability Foundation is building a future where all disabled people have access to accessible transport options so that they can make the journeys they choose. To achieve our ambitions, the Motability Foundation works closely with a wide range of stakeholders to develop, and then advocate for, policy and legislative solutions which result in tangible, real-world change. These roles are exciting opportunities for applicants who wish to play a crucial role at one of the UK’s foremost charities in doing this.
The successful applicants will work closely with the Government Relations and Public Affairs team, as well as colleagues within the Motability Foundation and at Motability Operations, to advance our policy priorities, support the integrated communications strategy, and help raise the profile of issues affecting disabled people in their everyday lives. You will also engage regularly with policymakers and external organisations.
These roles will suit experienced, proactive and collaborative policy professionals who want to strengthen their advocacy experience and help make transport more accessible and inclusive for disabled people.
What you’ll be doing
As a Policy Manager, you will lead policy work across agreed priority areas. This will include:
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Developing robust policy positions, from defining the problem and intended outcomes, to assessing evidence and options, testing discoverability, and making clear recommendations – working closely with colleagues within the Motability Foundation and at Motability Operations, and external stakeholders.
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Drafting high-quality policy outputs, including policy briefings, consultation responses, calls for evidence, and external correspondence.
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Collaborating closely with Communications teams colleagues to promote policy positions to government, public and professional audiences, including contributing to campaign development.
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Tracking political, legislative and policy developments, horizon-scanning for risks and opportunities and adapting policy positions and plans as needed.
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Building trusted external relationships with policymakers, industry stakeholders and others who shape or influence policy – namely, disabled people and Disabled People’s Organisations. You must be comfortable with effectively communicating complex policy positions to a wide range of stakeholders.
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Working collaboratively across the organisation to ensure policy work is aligned and informed by wider insight.
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Contributing to the development of the policy function, including its priorities, ways of working, and culture of collaboration, openness, and continuous improvement.
Your experience
We are particularly interested in candidates with experience in one or more of the following areas: disability and welfare, transport, tax and fiscal policy, or growth policy. Where candidates do not have direct experience, they should be able to demonstrate strong policy skills and the ability to apply them quickly to complex issues.
Must haves:
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Strong experience in policy analysis and developing evidence-led and creative policy positions - ideally on high profile and pivotal policy.
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Demonstrable experience of communicating policy to senior officials, Ministers, advisers, Parliamentarians and wider industry stakeholders, both verbally and through high-quality written outputs.
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Strong understanding of UK and devolved policy-making and legislative processes, and strong political acumen and awareness of UK and devolved governments’ priorities.
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Understanding of, or commitment to developing expertise in, disability, accessibility, and inclusive transport policy.
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Ability to work collaboratively within a larger team and a complex matrix organisation, and build effective internal and external relationships.
Nice to haves:
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Educated to degree level in a relevant discipline.
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Policy experience in the public, charity or not-for-profit sectors and/or in government (particularly HMT, DWP, No 10, BIST or DfT), Parliament, devolved administrations, or local government.
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Experience helping to establish, improve or professionalise policy processes in an organisation.
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Experience informing organisation-wide campaigns with policy expertise, insights and advice.
We are building a future where all disabled people have the transport options to make the journeys they choose.
The client requests no contact from agencies or media sales.
Using Anonymous Recruitment
This organisation is using Anonymous Recruitment to reduce bias in the first stages of the hiring process. Submit your application as normal and our system will anonymise it for you. Your personal information will be hidden until the recruiter contacts you.
Actively Interviewing
This organisation is scheduling interviews as applications come in. They're ready to hire as soon as they find the right person. Don't miss your opportunity, apply now!
As People Manager, you will be responsible for delivering high-quality HR and people support across the organisation. You will manage the day-to-day employee lifecycle, providing practical advice and guidance to managers and employees while ensuring compliance with employment legislation, regulatory requirements, and organisational policies.
This is a hands-on role focused on recruitment, employee relations, learning and development, performance management, and people administration. You will work closely with managers to help them build and maintain skilled, engaged teams that deliver excellent support to people with disabilities.
You will promote and uphold the values and culture of Lisieux Trust, ensuring that people remain at the heart of everything we do.
Key Responsibilities
Recruitment and Onboarding
- Coordinate and manage end-to-end recruitment activities.
- Prepare and place job advertisements across relevant platforms.
- Arrange interviews and support managers throughout the recruitment process.
- Complete all pre-employment checks including references, right-to-work checks, DBS applications and onboarding documentation.
- Ensure recruitment practices follow safer recruitment principles and employment legislation.
- Coordinate induction programmes for all new employees.
Employee Relations
- Provide first-line HR advice and guidance to managers and employees on people-related matters.
- Support managers with absence management, probation reviews, performance management and capability concerns.
- Coordinate disciplinary, grievance and investigation processes in line with organisational policies.
- Liaise with external HR and employment law advisors where appropriate.
- Maintain accurate and confidential employee records.
Learning and Development
- Coordinate mandatory and statutory training programmes.
- Monitor training compliance and produce reports for managers.
- Support the administration and monitoring of the Care Certificate process.
- Identify development needs and arrange learning opportunities for employees.
- Work with managers to support employee growth and career development.
Performance and Wellbeing
- Support managers in delivering effective probation reviews, supervision sessions and annual appraisals.
- Promote employee wellbeing initiatives across the organisation.
- Monitor absence trends and support managers in implementing appropriate actions.
- Encourage a positive, inclusive and supportive workplace culture.
HR Administration
- Prepare contracts of employment, contract amendments and employment-related documentation.
- Ensure HR systems and personnel records remain accurate and up to date.
- Produce regular workforce reports and people-related data as required.
- Support payroll administration by providing accurate employee information.
- Ensure compliance with GDPR and data protection requirements.
Compliance
- Ensure employment practices comply with current employment legislation and best practice.
- Maintain awareness of changes in employment law and support implementation of required updates.
- Support compliance with Care Quality Commission (CQC) requirements relating to workforce management.
- Assist with internal audits and quality assurance processes as required.
General Responsibilities
- Act as a role model for the values and behaviours of Lisieux Trust.
- Build positive and effective working relationships across the organisation.
- Maintain confidentiality and professionalism at all times.
- Participate in training and development activities relevant to the role.
- Undertake any other duties reasonably required and appropriate to the position.
The client requests no contact from agencies or media sales.
