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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?
Registered Charity
21 - 50
To transform lives through specialist knowledge, support and advocacy, and research.
The client requests no contact from agencies or media sales.
Thank you!
Lead the next chapter for liver health in the UK
This is a unique opportunity to lead a respected and financially stable health charity at a pivotal moment of transformation.
Following a successful merger, the organisation has proudly just completed a full rebrand to Liver UK, bringing together services, information and advocacy across all ages. With a clear, trustee-approved strategy for 2026–2032 already in place, the next Chief Executive will focus on delivery, growth and national influence.
A strong platform and a planned transition
This role comes at a natural and positive point within a planned leadership transition.Our current Chief Executive has provided long-standing, successful leadership and is excited to hand over the rebranded charity for it to be led into its next phase of strategic development, sustainability and growth.
The incoming CEO will inherit a well-led organisation with strong governance, a clear strategic direction, and real momentum.
About the role
As Chief Executive, you will lead delivery of an established strategy, ensuring the organisation continues to grow its reach, impact and income.You will work closely with an engaged and supportive Board of Trustees to maintain high standards of governance, regulatory compliance and risk management, while strengthening the charity’s voice in national policy and public affairs.
This is a role that balances external influence with internal leadership, ensuring both impact and organisational resilience.
Key responsibilities
- Deliver a trustee-approved long-term strategy, refining priorities as needed
- Ensure robust governance, legal and regulatory compliance
- Lead policy, public affairs and national influencing activity
- Maintain financial sustainability and drive income growth
- Lead and develop a high-performing Senior Management Team
- Oversee delivery of high-quality services and information
About you
You are a credible and values-driven leader with senior experience in the charity, health or related sectors.
You will bring:
- Proven senior leadership experience at Director or Chief Executive Officer level
- Strong understanding of governance, finance and regulatory compliance
- Experience influencing policy and working with senior stakeholders
- A track record of delivering organisational growth and impact
- Excellent communication and relationship-building skills
You will be confident working with a Board of Trustees, able to build strong relationships, provide clear advice, and operate effectively in a governance-led environment.
You will be motivated by improving health outcomes and confident leading an organisation with both national influence and strong operational delivery.
Why join us?
- A clear, trustee-approved strategy ready for delivery
- Strong governance, financial stability and organisational foundations
- A positive and well-managed leadership transition
- The opportunity to shape a newly unified, UK-wide charity
- A chance to make a meaningful difference in an under-recognised area of health
- A strong, engaged and motivated Board
A competitive salary will be offered, reflecting the experience, skills and leadership qualities of the successful candidate.
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The client requests no contact from agencies or media sales.
Thank you!
Headway UK developed the Approved Provider Scheme in 2011, which is a voluntary standards-based accreditation, for rehabilitation and residential units for people with a brain injury and we are looking for a new part time team member.
- Location: Preference for Midlands based, either home based or in Headway UK’s office in Nottingham.
- Salary: £35,000 FTE (pro rata for 21 hours per week) (days are flexible)
Brief overview
Are you a professional with experience supporting brain injury survivors?
Are you passionate about improving standards or care, for brain injury survivors?
Would you be good at conducting assessments and supporting residentials care units to improve the care that they provide?
Headway UK developed the Approved Provider Scheme in 2011, which is a voluntary standards-based accreditation, for rehabilitation and residential units for people with a brain injury and we are looking for a new part time team member.
By participating in the scheme Approved Provider units affirm their dedication to excellent care, operational efficiency, and continuous improvement. The accreditation of units is then published for families, individuals and professionals to help inform their choices when identifying suitable provision for brain injury survivors. Our accreditation process is designed to be collaborative and supportive, guiding units through every step towards achieving and maintaining exemplary service standards.
The role will involve, conducting and writing assessments and working with the Approved Provider and Training Manager to manage Lead Assessors, who are based around the UK and the Service User Perspective Assessors, who are either brain injury survivors, or family members/ carers.
Embrace Headway’s mission of Improving Life After Brain Injury. Join us to ensure the highest quality care for ABI survivors throughout their journey to recovery.
What you will do:
- Conduct Approved Provider assessments, which includes going into brain injury residential units and assessing the services they provide and making recommendations, to improve practice against the framework.
- Writing and reviewing reports for Approved Provider units, following assessments, that clearly highlight strengths and areas for development.
- Contributing to the development and growth of Headway UK’s Approved Provider scheme, by continuing to drive forward standards and onboarding new units.
- Working with freelance Lead Assessors and Service User Perspective Assessors (who are brain injury survivors or family members) who are based around the UK, to organise assessments and ensure the schemes standards are upheld.
About you
We’re open-minded and welcome all applicants who believe they can succeed. Though ideally, you will have:
- Prior experience of working in the field of acquired brain injury.
- Relevant professional qualification (e.g. occupational therapy, speech and language therapy, clinical psychology, physiotherapy, nursing, social work).
- Ability to write and moderate written reports of high quality and clarity, to provide accurate and accessible feedback.
- Very good IT skills, including be proficient in the Microsoft Office suite (e.g., Outlook, Word, Excel and Teams).
- Ability to gain the trust, confidence, and respect at all levels within external organisations and staff groups.
- Be an excellent communicator, with new and existing Approved Provider units.
Benefits
As a staff member at Headway UK you’ll have access the following range of benefits;
Financial Security
- Competitive Salaries
- Pension - You’ll be automatically be enrolled into the Pensions People with Headway contributing between 5 – 8%
- Occupational Sick Pay Scheme – Increasing with length of service.
- Death in Service Benefit - You’ll have the security of knowing if anything happens to you your loved ones will be provided for
Flexible Working
- Remote working – For the majority of our roles we can facilitate fully remote or hybrid working.
- We understand that a healthy work-life balance is essential for our team to thrive. Headway UK offers flexible working arrangements, promoting well-being and ensuring you can take care of yourself while you care for others.
Wellbeing
- You’ll benefit from a fully comprehensive 24/7 Employee Assistance Programme including access to counselling services.
- Eye Test Vouchers
- Mental Health First Aiders
Holidays and leave
- You’ll get 25 days leave incrementally increasing to 30 days based on service plus Bank Holidays.
- Birthday leave
Benefits
- You’ll have access to a range of shopping and lifestyle benefits and discounts through our IMHR Plus Privilege membership.
About us
Headway UK plays a pivotal role in supporting individuals and families affected by brain injuries. Our comprehensive services encompass rehabilitation, counselling, and practical assistance to help survivors regain independence and improve their quality of life. Headway UK is at the forefront of raising awareness about the challenges faced by those with brain injuries and advocates for their rights, ensuring they receive the care and understanding they deserve. Through a combination of educational initiatives, community outreach, and personalised support, Headway UK strives to rebuild lives, offering a lifeline to those navigating the complexities of brain injury recovery.
Embark on a fulfilling career with Headway UK and join our compassionate team and contribute to our mission of rebuilding lives after brain injury. Make a meaningful impact with Headway UK, where every role plays a crucial part in empowering those on the path to recovery.
Safeguarding
At Headway UK we are committed to the safeguarding and welfare of vulnerable adults. We expect all our staff and volunteers to share this commitment. We follow best practice as set out within the Care Act 2014. All successful applicants will be subject to safer recruiting procedures and will be required to complete mandatory pre-employment checks including a criminal background check and two satisfactory references.
Equality, Diversity & Inclusion
We recognise, value and champion diversity and inclusion. We want to ensure are staff population reflect the diverse service users that we support. For us diversity and inclusion is about building happy teams, full of people that want to learn and be inspired by each other, by our different experiences and backgrounds. Inclusion means providing the people we recruit with opportunities and valuing everyone’s contributions and perspectives.
We are also committed to removing barriers for applicants with a disability during our recruitment process, upon appointment and as an employee.
Please don’t hesitate to contact us if you need support with the application or you would like a chat about what it’s like to work with us.
Thank you for your interest in Headway UK and we look forward to getting to know you!
The client requests no contact from agencies or media sales.