5 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.  

Contract: 12-month FTC with potential for a permanent contract

Sebastian’s Action Trust (SAT) supports children with life-limiting conditions and their families. We help those families navigate the emotional and practical difficulties that come with caring for a child with complex needs and provide a place where they can connect, relax and make precious memories together. 

With the planned retirement of the current CEO, we are looking for an experienced charity leader with a background in fundraising, to take the organisation forward into the next phase of its strategic development. This could be an opportunity for a senior fundraising professional to take the next step into a CEO role. 

This role combines overall leadership of the charity with responsibility for income diversification and growth, with a focus on fundraising to drive stability and sustainability. The successful candidate will oversee the delivery of high-quality services, events and support provision, ensuring that the highest standards of health, safety and safeguarding are maintained. They will also nurture relationships with partner organisations and other local charities to explore opportunities for collaboration and efficiency. 

This role will lead a small but committed team of staff and volunteers who are passionate about the work we do, so you will be comfortable combining strategic thinking with pragmatism and creativity. 

The successful candidate will have experience of charity governance and financial management, and be confident working with a committed board and with partners and stakeholders to maximise impact for service users. They will also need to demonstrate hands-on experience of fundraising, with a track record of securing significant income from trusts, corporates and major donors.

This is a challenging but rewarding opportunity to make a real and lasting difference to families facing unimaginable difficulties. If this sounds like your next step, send your CV and covering letter or email to arrange an informal chat. 

Do you have a passion for using your research skills to improve the lives of older people needing care? Join our team!

In this dynamic role, you will provide research support across our advice, policy and campaign work. Your research will be practice-based, with a focus on improving people’s lives and bringing about real change. This will include:

• helping our advisers to support older people and their families
• building and improving our knowledge of care law across the UK
• helping to create new information resources
• feeding into national conversations about care reform
• supporting our work to push for a better care system

You will be a vital part of a small charity having a big impact. Providing the national adviceline for older people needing care and pushing for improved care services, we are a leading voice in the sector.

The ideal candidate will be a positive, can-do person, with a passion for championing the rights of older people needing care, and an enthusiasm for using your research skills to affect change.

You will:

• work closely with colleagues to ensure our research aligns with our advice service, campaigns, policy, communications and fundraising
• join the charity during an exciting period of change, as we seek to diversify and increase our reach across the UK
• work alongside colleagues who are experts in their field, with dedicated time for co-learning and sharing knowledge and skills
• be welcomed into our friendly, dedicated team

Care Rights UK is the charity focused on promoting the rights of older people needing care. For over 30 years our national advice service has been a lifeline for older people and their families. This is an exciting opportunity to join our small team and make a real difference.

“Working at Care Rights UK has truly been the most rewarding job that I’ve done. The charity’s work is invaluable to people in urgent need of help, and it has been a real privilege to assist with this. My work as a researcher has been fulfilling, stimulating and challenging in equal measure; the team are a joy to work with and enormously supportive. I would strongly recommend this role to anyone who is considering applying.” George Hill, former Researcher at Care Rights UK

Even if you feel you don’t meet all the criteria outlined in the person specification, if you’re keen to learn and to apply your skills, we’d love to hear from you!

The Role
Policy Development Lead
We are looking for a Policy Development Lead to provide strategic leadership, coordination and expertise in proactive policy development across NDCS. This exciting new role will help us think beyond immediate policy activity, identify where system change is needed, and develop longer-term policy positions that are informed by evidence, specialist insight, lived experience and external practice.
The role will initially focus on Education, while retaining the flexibility to support wider policy development across areas such as early years, social care, health, benefits, sign language and other emerging priorities. Working closely with Platform Leads, Policy and Nation Leads, and colleagues across the organisation, you will help ensure NDCS develops strong, evidence-based policy positions that create meaningful change for deaf children and their families.
What you'll do

• Lead and coordinate proactive policy development activity across NDCS, identifying opportunities for deeper policy thinking and systems change.
• Apply systems thinking to identify complex challenges, explore interdependencies and develop practical solutions
• Identify emerging trends, risks and opportunities, using systems thinking and horizon-scanning approaches to inform future organisational priorities.
• Translate complex evidence, research and lived experience into clear recommendations that support organisational decision-making and influence.
• Influence senior leaders and key stakeholders by providing strategic policy advice, insight and recommendations.
• Lead and coordinate policy development activity across multiple teams, ensuring expertise, insight and activity are aligned.
• Build productive relationships with external researchers, policy networks and sector experts to bring innovative thinking into NDCS.
• Identify cross-cutting themes and opportunities for change by bringing together insight from local, regional and national sources.
• Facilitate strategic conversations that help colleagues explore complex issues, understand system interdependencies and develop long-term solutions.
• Champion a proactive, evidence-informed approach to policy development across the organisation.

What you'll need

• Significant experience in policy analysis, development or strategy within a complex organisation, sector or policy environment.
• Proven ability to translate complex evidence, research and lived experience into recommendations that drive organisational action and influence.
• Experience influencing senior decision-makers and shaping organisational, sector-wide or public policy direction.
• A track record of leading and coordinating complex work across multiple teams, functions or stakeholders.
• Excellent communication skills, including the ability to produce high-quality briefings, policy positions and strategic recommendations.
• Experience bringing together evidence and insight from multiple sources to identify emerging issues, trends and opportunities for change.
• Strong systems-thinking skills and experience developing long-term solutions to complex challenges.
• The ability to lead through collaboration, credibility and specialist expertise, building alignment across diverse teams and stakeholders.
• Strong understanding of the policy, practice and systemic issues affecting deaf children and families, and the ability to apply this knowledge to strategic policy development.
• Strong digital skills and a sound understanding of agile values & principles.
• Acriminal record check / DBS disclosure (if offered the position).

What you'll get

• Home-based working with flexible hours.
• 25 days holiday - plus an additional 3 days at Christmas (& bank holidays).
• Pension (5.5% employer contribution).
• Healthcare Cashplan.
• Annual performance-based salary increase.
• Employee Assistance & Wellbeing Programmes.

What we do
The National Deaf Children's Society are the leading charity for deaf children. We give expert support on childhood deafness, raise awareness and campaign for deaf children's rights, so they have the same opportunities as everyone else.

Pre-employment checks
As part of our commitment to creating a safe and trusted environment for the children, young people and families we support, all offers of employment are subject to background checks. These include Right to Work verification, Criminal Record Disclosure, and ID and address verification.

To complete an online Right to Work check, you will need a valid UK or Irish passport, or a government share code if you are not a British citizen. If an online check is not possible, we’ll need to verify your documents in person at our London office. Please be aware that travel time and expenses for this appointment cannot be reimbursed.

Disability Confidence
We are a Disability Confident Employer and committed to offering interviews to candidates who request to be considered under the disability confident scheme and meet the minimum requirements for the role.

The National Deaf Children’s Society is a registered charity in England and Wales no. 1016532 and in Scotland no. SC040779.