3 Freedom project regional manager jobs

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.  

Citizens UK 

Citizens UK is the UK’s biggest, most diverse and most effective people-powered alliance. We bring communities and local organisations together to work on issues that matter; from campaigning for zebra crossings on dangerous roads, to reforming the immigration system, to the Living Wage campaign. We have a track record of winning change through hundreds of local and national campaigns. We know everyday people have the ability to shape the world around them. We believe that through developing local leaders, we can drive nationwide change and create community-led solutions to big and small problems.

Living Wage Foundation 

The Living Wage movement began in 2001, after Citizens UK brought together communities in East London to discuss poverty and low pay. The campaign grew in momentum and soon required a mechanism to recognise employers who wanted to join the movement, which saw the establishment of the Living Wage Foundation in 2011.

Still part of Citizens UK today, the Living Wage Foundation (LWF) continues to work with community organisations to make sure the voices of both workers and businesses are part of the Living Wage movement. We now work with over 16,000 employers, benefitting over 490,000 people and winning over £4bn of better wages for people who need it most.

Citizens UK works with a broad base of institutions across the political spectrum. At the Living Wage Foundation, we take the same deliberately broad-based approach and accredit all organisations who pay the real Living Wage to their directly and indirectly employed staff and are committed to tackling in work poverty.  As a team we work across a range of industries and sectors to achieve this mission. We seek pragmatic coalitions in order to progress specific campaigns, and partnership around a particular issue such as Living Wage, does not imply an endorsement of broader purpose and policies. 

Purpose 

At Citizens UK (CUK), our organisers and project staff work within communities to develop leaders, strengthen organisations, campaign for change and organise across difference. There are various project roles and operational, communication, finance and HR roles that support the organisation and project staff and organisers to deliver on this mission and work. This work is rewarding and can be challenging; it requires a personal commitment to inclusion, a willingness to listen and disagree respectfully, and an interest in working in an organisation where our staff, member institutions and leaders will come from a diversity of backgrounds and often hold views that may be very different from our own. More information about how we operate within this context and build trusted relationships across difference can be found on our website and is covered in induction. Onboarding and navigating this relational culture, and type of work, is supported by line managers and further training. 

Main Responsibilities 

As the Data and Membership Officer for the Living Wage Foundation (LWF), you will play a pivotal role in supporting the smooth running of our internal processes and supporting our network of nearly 17,000 accredited Living Wage employers. Your responsibilities will span data management, customer service, finance administration, and team support. You will contribute to effective data management by supporting system updates, maintaining high-quality records on platforms such as Salesforce and ActOn, and generating reports for use by senior management.

Additionally, you will coordinate the administration and reconciliation of credit card payments and act as a liaison between the CUK Finance and LWF teams. In the area of customer service, you will manage our Employer support email inbox, respond to queries, and escalate complex issues as needed. You will also be responsible for updating internal systems, supporting merchandise and branding requests, and representing the Foundation in both written and verbal correspondence. Team support duties will include arranging logistics for team events, providing occasional administrative assistance to senior leadership, and ensuring internal handbooks and guidance remain current.  Throughout all areas of your work, you will collaborate closely with colleagues across the LWF Team to ensure we meet the needs and expectations of our employer network and other key stakeholders. 

Working as the Data and Membership Officer for the Living Wage Foundation, reporting to Senior Data and Insight Manager (LWF Operations and Insight team) your main responsibilities will include: 

Project Management 

• Support LWF team with good data management, reviewing employer pipeline numbers, reporting to Senior Management Team (SMT) when there are issues or delays. 

• Clean employer data, escalating complex issues to relevant colleagues. 

• Support the Senior Data and Insight Manager to maintain high-quality data across our systems, including Salesforce (CRM) and ActOn (marketing email platform). 

• Support the Operations and Insight Team with testing and implementation of new systems and processes. 

Learning and expertise 

• Keep internal handbooks and guidance up to date with ways of working practices, systems and policies, working with the LWF team to consider and implement improvements to make LWF an efficient and positive place of work. 

• Create and share basic reports from Salesforce for use by the team and SMT. 

Communications 

• Represent the Living Wage Foundation coherently in writing and verbally. 

• Work collaboratively with the team and across Citizens UK to ensure that we are meeting the customer service expectations of our employer network and stakeholders. 

Develop and manage external relationships 

• Manage our Accreditation Inbox, including responding to simple accreditation or form questions, and escalating more complex questions where necessary in a timely and helpful manner. 

• Update Moneypenny (LWF switchboard) on team changes, holidays etc. Receive and respond to general enquiries received through the switchboard. 

• Support on Employer Merchandise and branding requests where required, ensuring timely delivery and clear correspondence.

Develop and manage internal relationships 

• With Operations & Data Officer, support the LWF team to book items in and out of LWF merchandise library. 

• Arrange logistics for LWF all staff Away Day.

• Provide Senior Leadership Team (SLT) with occasional administrative support including booking travel, rooms, and making purchases when necessary. 

Income and resources 

• Coordinate the administration and reconciliation of credit card payments. 

• Liaise between CUK Finance team and LWF team, ensuring each team is updated on processes and working cross-team to ensure good communication. 

• Administration of LWF Away Day budget. 

Contribute towards Citizens UK’s strategic objectives 

• Responsibility for delivering agreed areas of the Foundation’s work plan.

• Work collaboratively with the LWF team and across Citizens UK to ensure that we are meeting the expectations of our network and stakeholders.

• Display self-awareness of DEI issues and good practice, considering impact on direct reports and stakeholders.

• Understand how your role contributes to the purpose of the Foundation and the core mission of Citizens UK.

• Implement Citizens UK’s and the Foundation policies, procedures, and values in own work and that of the team. 

Personal Specification 

(D) Desirable, (E) Essential 

Qualifications 

• Professional certification in project management, administration, finance (D) 

Experience 

• Previous experience supporting data management and reporting, ideally using CRM systems such as Salesforce (E) 

• Prior experience in customer service or stakeholder engagement (E) 

• Experience working in a team-based office environment (E) 

• Experience in finance administration, including credit card administration and budget management (E) 

• Experience with cross-team liaison or project coordination (D) 

Key skills and knowledge 

• Strong organisational skills with the ability to manage multiple tasks and meet deadlines (E) 

• Excellent written and verbal communication skills, with the ability to respond professionally to internal and external queries (E) 

• Proficiency in Microsoft Office and familiarity with CRM and data management systems (E) 

• Attention to detail and accuracy in handling financial and data-related tasks (E) 

• Ability to produce and analyse basic reports (E) 

• Understanding of confidentiality and data protection principles (E) 

Personal qualities & values 

• A proactive self-starter, able to work independently and take initiative (E) 

• Collaborative and able to work effectively as part of a diverse team (E) 

• Flexible and adaptable, willing to support a range of operational needs (E) 

• Committed to the mission and values of the Living Wage Foundation and Citizens UK (E) 

• Willingness to learn new systems and processes, and to support continuous improvement (E) 

• Positive, professional attitude and commitment to high-quality service (E) 

Interview date: 21-22 October 2026