Head of content and stories jobs in bedford, derby
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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!
Purpose of the role
The purpose of this role is to increase the fundraising capability of The Vitiligo Society and secure the income we need to deliver our support to those affected by vitiligo. It is part of our new fundraising strategy.
Reporting to the Charity Director you will take the lead on establishing a fundraising programme. You will also support our community and membership fundraising, recruiting and supporting volunteer fundraisers and helping to improve and maintain our membership & donation processes.
This job could be for you if you have fundraising experience and are pro-active, organised and motivated to try new things and contribute ideas.
You will be joining a successful charity and bring your skills to an often unacknowledged but truly important cause in a friendly and supportive team environment.
Our Mission
To beat vitiligo by eradicating the psychological, social and physical effects on people’s lives and by finding effective treatments and a cure.
Your Experience
We are looking for a candidate who has a background in charity fundraising, in particular community, Trust and Foundation fundraising.
Key responsibilities
Fundraising from Trusts and Foundations
Leading on applications to trusts and foundations with input from the Charity Director and delivery teams as needed, incl:
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Writing and submitting high quality applications to trusts and foundations that reflect The Vitiligo Society and our members' stories.
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Researching potential charitable trusts and foundations to approach for funding.
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Build and maintain positive relationships with key personnel in relevant funding organisations.
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Support monitoring and evaluation and coordinate relevant reporting to funders.
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Establishing and maintaining a funders database within our existing CRM system.
Community Fundraising
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Assisting with improving the processes for donations from individuals.
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Working in cooperation with the staff, trustees and volunteers to develop and deliver up to 3 fundraising campaigns per year (a minimum of 1).
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Recruiting and supporting community volunteers to undertake fundraising activities.
Other Fundraising
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Working with the Charity Director to develop the organisation’s Trusts and Community fundraising strategy.
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Assist with the development of a corporate fundraising strategy as appropriate.
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Assist with the reporting on income generation and evaluating progress.
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Keeping up to date with best practice in fundraising and fundraising trends.
People Management
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Oversee the engagement of volunteer fundraisers, supporting them to undertake community fundraising activities and sharing their stories to inspire others.
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Build, and encourage, positive working relationships with other staff to ensure members receive relevant information at the right time and that communications reflect the lived experience of individuals affected by vitiligo.
General
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Working within the The Vitiligo Society ethos and values.
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Be part of a rota of staff & volunteers answering the Society's helpline
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Attend The Vitiligo Society events when required, which may include planning and attending support events virtually and in person.
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Be part of the rota for checking The Vitiligo Society’s social media outside normal office hours.
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Support content creation for The Vitiligo Society, by identifying potential case studies and stories.
This job description cannot cover every task that might arise within the post and the post-holder will be expected to carry out other duties from time to time.
This is a one year fixed term role until 31 March 2026 with potential for extension. Applicants need to be based in the UK.
Please note: We reserve the right to close this vacancy early if we receive sufficient applications or find the right candidate. We encourage interested applicants to apply as soon as possible.
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.
This is an exciting opportunity for a skilled and thoughtful communicator to lead our communications and advocacy work during a period of maternity cover.
At Martin James Foundation, we work alongside a network of committed partners who lead change for children and families in their contexts. Our role is to contribute where we can, granting funds, sharing learning, supporting campaigns, influencing systems and amplifying the good work already happening. You’ll lead on implementing our communications and advocacy strategy, manage key partnerships, and strengthen our presence across digital platforms. You’ll also support internal communications projects.
This role is central to how we tell our story, build meaningful collaboration, influence change and ensure the voices of those with lived experience are prioritised, listened to and able to lead change.
About Martin James Foundation
The Martin James Foundation (MJF) is a global network of charitable organisations working with a shared vision: a world in which children grow up and thrive in safe and loving families.
The Foundation is made up of:
· MJF Global – our programmes team, which uses the Foundation’s technical and financial resources to support locally rooted partner organisations around the world. Together, we work to strengthen families and reduce reliance on orphanages, contributing to global efforts to reform children’s care.
· Key Assets – a group of independent, non-profit fostering agencies operating in Australia, Canada and New Zealand. With over 30 years’ experience, they provide foster care, family strengthening, and support for people with disabilities. Their trauma-informed approach is built on strong partnerships and a commitment to meeting the unique needs of those they serve.
The Need
Millions of children are separated from their families, not because they have no one to care for them, but because of poverty, crisis, or a lack of support. Many end up in orphanages, yet removing a child from a struggling family does not solve poverty. It can deepen harm, sever vital family bonds, and leave children more vulnerable to instability, trafficking, and lifelong inequality. Our mission is to reduce the reliance on institutional care by supporting proven alternatives and advocating for systemic change.
What You’ll Do
Advocacy & Policy Influence
- Lead the delivery of advocacy strategies to raise awareness about the benefits of family-based care and the harms of institutions, including orphanages
- Manage MJF Global’s advocacy partnerships, supporting joint campaigns and influencing initiatives
- Oversee project-based public affairs and PR efforts, coordinating with agencies, consultants and media stakeholders where needed
- Represent MJF Global in key coalitions, working groups, and sector events as required
- Strategic communications
Implement the communications strategy that aligns with our organisational goals
- Manage our editorial calendar across digital and offline channels, highlighting awareness days, partner updates and sector milestones
- Write and curate content for social media, newsletters, campaigns, and reports
- Oversee relationships with our design and web partners, ensuring consistency and quality
Stakeholder Engagement & Partnerships
- Support MJF’s global marketing working group by co-coordinating with marketing leads across Key Assets
- Strengthen relationships with internal teams and external collaborators, ensuring alignment on messaging and values
- Provide guidance to global partners, as requested/required, developing and implementing their own communications plans
Operational Comms & Tools
- Manage CRM platforms (e.g., MailChimp), website updates (WordPress), and file sharing (SharePoint and Google Drive)
- Use project management tools to track campaign and content workflows
- Lead quarterly reporting on communications and advocacy performance
What We’re Looking For
We’re seeking someone who is not only an excellent communicator but also a values-led leader, someone who can work with sensitivity across contexts and cultures, while keeping an eye on strategy and detail.
Essential
- An enhanced Disclosure and Barring Service (DBS) or your country equivalent certificate (can be obtained upon appointment)
- Experience leading and implementing communications and/or advocacy strategies in the charity, NGO, or development sectors
- Strong understanding of care reform, family strengthening, or children’s rights issues
- Ability to manage relationships and partnerships, particularly in advocacy, policy or public affairs work
- Excellent communication skills across formats including written, verbal and visual. Fluency in English is required.
- A collaborative, curious and proactive mindset, with the ability to work independently and across cultures
- Commitment to equity, anti-racism, and decolonising approaches in communication and advocacy
Desirable
- Experience working in or with organisations in the Global South
- Familiarity with digital tools like Canva, WordPress, MailChimp, or Adobe Suite
- Experience in journalism, media relations, or public policy advocacy
- Confidence using communications to support locally led, ethical storytelling and systems change
What We Offer
- Fully remote working with flexible scheduling
- 25 days annual leave plus bank holidays
- Meaningful work with a passionate, globally distributed team
- Opportunity to contribute to a mission-driven organisation that centres lived experience and ethical partnership
The Martin James Foundation strives to enable a diverse range of participation and contributions, and we welcome applications from all ages and backgrounds. People with lived experience of alternative care, and from people outside of the UK are encouraged to apply.
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!
Ready to use your creativity to make a difference? Join a national charity driving community wellbeing and real social change.
We’re looking for a passionate, hands-on communicator to lead marketing and fundraising at Self Help UK – helping us grow support, tell powerful stories, and connect with people who need us most.
Department: Communications and Public Affairs
Contract type: Permanent
Hours: Full time
Salary: £36,000 – £38,000 per annum
Location: Home Based with UK wide travel as required
Reports To: Media and External Affairs Manager
The National Fire Chiefs Council (NFCC) is seeking a proactive and skilled Media Officer to join our Communications and Public Affairs team. This is a newly created role, offering the opportunity to help shape and strengthen NFCC’s voice in the national conversation around fire and rescue services.
Reporting into the Media and External Affairs Manager, you will play a central role in growing our media presence and positioning NFCC as the go-to source for journalists covering national fire and rescue issues. You will help to ensure our messages are clear, timely, and authoritative across all platforms.
Join us and help ensure that fire and rescue services have a strong, consistent voice on the national stage.
Key responsibilities:
Serve as a point of contact for incoming media enquiries.
Draft high-quality, publication-ready communications content – including press releases, news articles, opinion pieces and other engaging content.
Support NFCC’s campaigns and policy initiatives by securing media coverage and developing strong relationships with journalists and editors.
Take ownership of key communications tools and systems, including media monitoring and audit of coverage.
Act as the lead Comms officer on at least one area of NFCC’s work in partnership with the relevant NFCC teams and lead officers (but will also work on a wide range of our issues and areas).
Participate in an out-of-hours communications rota as part of NFCC’s communication support function (with some out of hours support – see job description for more information).
What we are looking for:
Experience in a media, journalism or communications role.
Excellent writing skills with the ability to produce accurate, compelling content under pressure.
Confidence in handling media enquiries and building positive relationships with the press.
Strong organisational skills and the ability to manage multiple priorities effectively.
A collaborative approach, with experience working across teams and engaging with senior stakeholders.
A good understanding of the UK media landscape and wider external environment.
If this sounds like the kind of opportunity that you would be interested in, please have a look at the Job Description on the NFCC website and apply.
Working with us:
NFCC is a fully remote organisation, and all staff work from home. This role will involve some travel for stakeholder meetings, events, conferences, training sessions and team away days, for which travel expenses are paid.
How to apply:
Please complete the application form linked from the ‘apply now’ button on the NFCC Website. CVs will NOT be accepted for this position.
Closing Date – Sunday 1 June with interviews being conducted on Teams on Tuesday 17 June. If you are not available for interview on this date, we will try to provide an alternative date, though we advise that we may not be able to do this.
NFCC is committed to safeguarding and promoting the welfare of children, young people and adults and will require a DBS check to be completed prior to commencing in post.
NFCC is committed to being an inclusive employer. We comply with the Equality Act 2010, and we believe that everyone deserves to work in safe environments that are free from bullying, harassment and discrimination, abuse, and harm, where they feel supported, welcome, and able to thrive.
NFCC acknowledges the duty of care to safeguard, protect and promote the welfare of children and vulnerable adults and is committed to ensuring safeguarding practice reflects statutory responsibilities, government guidance and complies with best practice, all staff are expected to share this commitment.
NFCC is an independent membership association and the professional voice of UK fire and rescue services.
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!
The eoa exists to grow and strengthen employee ownership as a force for powering fairer livelihoods, stronger businesses, and a more resilient economy. With 800+ member businesses and a community of thousands of employee owners, we are the national voice for employee ownership in the UK.
Our refreshed strategy is focused on accelerating impact through people powered growth. We’re here to make employee ownership a mainstream business model choice—by expanding the sector, setting the standard for excellence, and building a connected, values-led ecosystem. We do this through sharp insight, high-impact advocacy, and a thriving member experience.
For founders and business owners exploring employee ownership, or for leaders and managers building Great EO businesses, the eoa offers tools, knowledge, experience and connection. We facilitate powerful peer learning, codify what works, and champion the stories that inspire others to choose EO.
Together with our members, we’re creating the conditions for employee ownership to thrive—seizing the political, cultural, and digital opportunities ahead. and this is where you come in.
As Director of Partnerships and Growth, you’ll be the driving force behind the eoa’s external influence and reach. you’ll lead our advocacy and external affairs strategy, build meaningful partnerships, and deliver powerful events programmes that accelerate adoption of Great EO. You’ll also shape the narrative—ensuring our insights, policy recommendations and thought leadership land with impact.
This is a high-profile, senior leadership role at a pivotal time for the EO community. It calls for someone with a track record in advocacy or external affairs, strong commercial acumen, and the ability to lead high-performing teams. It also needs a big-picture thinker - someone who can champion EO, influence change, and help us build a more inclusive, resilient economy.
If you’re excited about the opportunity to grow an economy that puts people at the heart of business, we’d love to hear from you.
Role Details
At the heart of this Director of Parnterships & Growth role is the opportunity to shape the external environment for employee ownership, champion the voice of our members, and lead high-impact strategies that grow both our reach and the sector itself.
You’ll lead on policy, advocacy, external affairs and events—crafting compelling narratives, building powerful partnerships, and delivering programmes that drive commercial sustainability and sector-wide change.
From shaping relationships with key stakeholders and securing strategic sponsorships, to overseeing the delivery of thought leadership, content, and events, you’ll ensure that the eoa is not just part of the national conversation—but leading it.
Your ability to influence, convene, and inspire will be critical to removing barriers to employee ownership and unlocking the potential of our £1.7m organisation to deliver even greater impact.
Join us on this exciting journey where your leadership will shape policy, grow influence, and contribute to our mission of unlocking the potential of people, businesses, and the economy through employee ownership.
This role is remote, however regular travel to our HQ in Brough and across the UK is expected.
Key Responsibilities
- Lead external affairs, collaborating with stakeholders to shape policy, advocacy and best practice that removes barriers and expands EO.
- Establish relationships and secure commercial partnerships and sponsorships, generating revenue to support advocacy, events, and sector growth initiatives.
- Engage key stakeholders to co-produce content that positively influence EO practice and policy and amplify the eoa’s voice in public affairs.
- Oversee delivery of an effective content strategy that delivers our commercial objectives and positions the eoa as the leading EO authority.
- Oversee events programmes, ensuring they drive knowledge-sharing, sector development, and commercial sustainability.
- Represent the eoa at industry forums, policy roundtables, and public affairs events, championing the employee ownership model.
- Collaborate with the Director of Membership & Operations to align advocacy efforts with member needs and engagement.
- Lead and develop high-performing teams, fostering innovation and delivering measurable impact across advocacy, policy, event activities.
Success in this role
Success in this role means having a positive impact on the growth rate, influence and adoption of great EO across the employee ownership sector. Strengthening and expanding stakeholder relationships, driving advocacy impact and securing commercial sustainability through a diverse mix of sponsorships, partnerships will also be indicators of success.
Key outcomes for the role
- Growth of the employee ownership sector. Measured by increased number of EO businesses, heightened sector awareness
- Strengthened corporate engagement. Measured by growth in strategic partnerships, corporate and government engagement
- Strong Commercial Sustainability. Measured by increased sponsorship revenue, secured long-term commercial partnerships
- Increased policy influence. Measured by policy recommendations adopted, increased government engagement
- Enhanced sector insight and intelligence. Measured by utilisation of high-quality data and insights for regular sector related content outputs.
- Development and adoption of best practice. Measured by creation, adoption and promotion of best practice across the EO network.
- Successful events programmes. Measured by iIncreased participation, sponsorship growth, positive feedback.
About you
- Proven expertise in advocacy, public affairs, or policy leadership, ideally within a business, trade body, or membership association.
- Strong stakeholder engagement skills, with experience influencing government, media, and corporate partners.
- Demonstrated ability to drive sectoral or policy change, leading successful advocacy initiatives.
- Strong commercial acumen, with experience in sponsorship acquisition, revenue generation, and developing financially sustainable initiatives.
- Exceptional strategic communication and storytelling skills, able to engage and mobilise diverse audiences.
- Experience in event programme development, ensuring high engagement and sector impact.
- Passion for employee ownership and economic models that promote shared prosperity.
- Innovative, creative, and proactive in problem-solving and strategy execution.
- A confident and transparent leader who fosters collaboration and inclusivity through teamwork.
- Self-aware with emotional intelligence, resilience, and integrity.
Role Summary
- Contract: Permanent
- Hours: Full time, 37.5 hours per week
- Location: Remote, with regular travel to eoa offices and national events
- Salary & Benefits: £65,000 p/a + 7% Pensions. 30 Days leave + Bank Holidays.
- Reports to: CEO
- Management: TBC
We exist to grow and strengthen employee ownership as a force for powering fairer livelihoods, stronger businesses, and a more resilient economy.





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!
We are currently hiring for a new Trusts, Foundations and Corporates Manager, who will be responsible for managing income streams and maintaining a high standard of applications, reporting and stewardship for our trusted partners.
You will be joining a friendly team and your hard work will make an immediate, real impact for our inherited sight loss community.
Key responsibilities:
* Secure funding from Trusts, Foundations and Corporates sources to meet annual income targets and key performance indicators.
* Maintain existing relationships with Trusts, Foundations and Corporates and deliver growth opportunities by identifying new funding opportunities and monitor external trends regularly.
* Secure Corporate sponsorship for key events and projects including our Annual and Professionals’ conferences, our upcoming gala dinner and our Look Forward magazines.
* Write compelling cases for support and proposals, refreshing our case studies, impact and messaging regularly.
* Schedule, write and submit donor reports as part of our requirements and stewardship.
* Work with the Communications Manager and Head of Income Generation to create relevant case studies, news stories and social media content relevant to Trusts, Foundations and Corporates.
* Identify and cultivate new Corporate prospects and ensure that our database is kept up to date.
* Lead an exemplary stewardship programme for existing Corporate supporters and sponsors, to maximise income and establish donor loyalty.
* Collaborate with other internal teams to engage colleagues on the importance of Trusts, Foundations and Corporates by sharing successes and ways for colleagues to support these areas.
* Regularly measure the success of our outreach with pharmaceutical companies and Corporate prospects.
* Attend relevant networking events to grow our presence in the Corporate space and maintain an engaging post-event stewardship with all new contacts.
* Research and prepare applications and presentations for Charity of the Year partnerships and grow this area year-on-year.
* Create high quality, inspiring proposals, pitches, copy and other material for new opportunities, ensuring that all communications are on brand.
SPECIFICATION (E = essential, D = desirable):
Skills & Experience
Minimum of 1 year working in a similar role - E
Working in a small team - D
Educated to ‘A’ level standard or commensurate experience - E
IT literate and highly adept in the use of MS Office Suite - E
Familiar with email and internet - E
High standard of written and verbal English and grammar - E
Database experience - E
Personal Attributes
Confident, polite and cheerful telephone manner - E
Quick learner able to act on initiative and in the absence of managers - E
An eye for detail and a flair for organisation - E
Ability to empathise with people with disabilities (particularly visual impairment) - E
Able to manage a busy workload - E
Commitment
Empathy with Retina UK’s aims and objectives - E
Willing to live Retina UK’s values - E
The client requests no contact from agencies or media sales.
Winston’s Wish is a digital first organisation leading the way in Digital Transformation across the Bereavement sector. We have an exciting opportunity to join our ambitious Mass participation team as our Individual Giving Manager. This role plays a vital part in helping Winston’s Wish turn up the dial across our Individual Giving Fundraising. The Individual Giving Manager is responsible for creating, developing and delivering a fundraising plan to grow existing and new support for Winston’s Wish across our online and offline channels. This includes Direct Mails, Regular Giving, our Lottery, Legacies and In Memory giving income streams.
As the driving force behind our individual giving activity, you will help us to engage individuals across the country by bringing them closer to our work, encouraging them to stay longer, give more and become true ambassadors for our vital work with grieving children, young people and families. We’re looking for a highly creative individual who can help us to stay one-step ahead of the curve and excite new and existing audiences to get behind our vision of a society in which every child can get the help they need when someone close to them has died.
MAIN RESPONSIBILITIES
Strategy
- Lead on the development and implementation of our Individual Giving strategy, supported by the Head of Mass Participation and the Director of Fundraising & Marketing.
- Ensure all opportunities and future plans are in line with Winston’s Wish’s over-arching fundraising strategy to meet financial targets, organisational objectives and KPIs.
- Maintain an awareness of philanthropy trends, news, events and legislation in the UK to ensure that Winston’s Wish remains up to date on key changes which are likely to impact on individual giving.
Generating Individual Giving Income
- Lead on and deliver a plan to increase individual giving income from streams including, but not exclusive to, direct mail, regular giving, legacies, in-mem and our charity lottery
- Effective use of KPIs to ensure decisions are driven by evidence and real-time data.
- Continuously analyse our income and supporter data to measure effectiveness of activities and return on investment.
- Work alongside our design agencies and in-house marketing team to develop and manage direct mail campaigns, including segmentation to ensure campaigns will be carefully targeted and designed to maximise income.
- Explore and test new methods for donor recruitment and increasing donations.
- Seek every opportunity to increase awareness of legacy giving to Winston’s Wish and monitor the effectiveness of these activities over time.
- Manage a growing portfolio of legacy enquirers with appropriate contact and timely solicitation of prospective legators including hosting events and tailored stewardship.
- Manage the stewardship and development of our regular giving programme including uplift campaigns and solicitation of new donors to agreed targets.
- Work alongside the wider fundraising team to ensure effective cross-selling of individual giving products and vice-versa identify opportunities to introduce other fundraising products to our individual givers.
- Identify supporters who could provide compelling content which could be used by the wider Fundraising & Marketing team to inspire further support including suggesting key individuals who could feature in online and offline publications.
- Work with the Philanthropy & Partnerships Manager to ensure that potential major donors are identified and included in relevant activities.
Administration
- Diligently maintain records of all interactions with supporters on Salesforce.
- Ensure all activities comply with appropriate legal, regulatory and fundraising good practice and with Winston’s Wish policies and standards.
- Keep a close eye on incoming donations to ensure they are coded correctly and that supporter data is accurately recorded in accordance with GDPR.
- Effective management and control of expenditure across all projects and campaigns in line with agreed expenditure budgets.
All Staff
- Contribute to the vision and mission of Winston's Wish; working with colleagues in all teams to meet the objectives of Winston’s Wish.
- Work to objectives, targets and work plans agreed with your line manager.
- Undertake specific projects and other ad hoc duties agreed with your line manager, fulfilling any deadlines, reviews and reporting procedures required.
- Take an active part in the one-to-one process and participate in training agreed with your line manager.
- Contribute to the wider charity sector and childhood bereavement sector by getting to know those working in the same space and actively contributing to sector-wide events.
- Ensure the health and safety of all colleagues, volunteers and visitors in accordance with Winston’s Wish policy.
- Promote equality of opportunity and diversity in accordance with Winston’s Wish policy.
PERSON SPECIFICATION
Essential
- A sound understanding of the principles of fundraising across individual giving, in-memory fundraising, and legacies.
- Proven track record of preparing successful programmes of activity and business plans to recruit, engage, inspire, and retain supporters in a not-for-profit organisation, or similar transferable experience gained in the commercial sector.
- Specific experience of delivering an individual giving programme.
- Experience of budgets, including planning, forecasting, and analysing performance.
- Experience of high-level use of a customer relationship management system.
- Experience of managing direct mail campaigns.
- Strong organisational skills and keen attention to detail to plan and schedule multiple activities, respond flexibly to opportunities, handle conflicting demands and meet tight deadlines.
Desirable
- Understanding of childhood bereavement.
- Experience of using Salesforce CRM.
Recruitment Timetable
Application deadline: Wednesday 28th May 2025
Interview date: Friday 13th June 2025
Interview location: MS Teams
Winston’s Wish reserves the right to close the vacancy early if we receive a high number of applications for the role before the closing date.
Winston’s Wish is a charity that helps children, teenagers and young adults find their feet when their worlds are turned upside down.

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!
Job Title: Community Engagement Officer
Location: Remote with frequent travel (must be UK-based)
Reporting To: Advice and Support Lead
Hours: Full-time
Salary: £26,000 - £28,000
Contract Type: Permanent
About Us
Metabolic Support UK (MSUK) are the leading organisation for Inherited Metabolic Disorders (IMDs), supporting thousands of people worldwide through providing individual support, building communities, and continually advocating for and empowering those living with IMDs.
We are a small but mighty team providing individual support, advice and connection to the over 40,000 living with an IMD in the UK and more across the world. We have a strong interest in rare disease policy and campaign for the rights of our rare disease community for better healthcare services, access to treatment and to be able to live well everyday.
Role Overview
MSUK are seeking a passionate and proactive Community Engagement Officer to strengthen and grow our patient and family community. There are over 1500 IMDs and many of our community use social media, other patient groups and in-person events to connect and learn. This role is central to how we engage with the people we support — through social media, community groups, events, and collaborative partnerships. You’ll be the bridge between our charity and the people we serve, helping to build a supportive, inclusive, and informed community.
Key Responsibilities
Engagement & Social Media
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Manage and monitor all online patient communities responding to community messages and comments with empathy and timeliness
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Moderate relevant support online community groups, ensuring they are safe, active, and welcoming spaces
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Identify themes and areas of interest to advocate internally for MSUK response to meeting community need
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Signpost our Individual Support service, identify and flag individual enquiries to the Individual Support Lead
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Working with our Campaign & Comms Lead, grow the charity’s presence across social media platforms (e.g., Facebook, Instagram, LinkedIn, X, TikTok)
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Develop content that resonates with patients, families, and supporters, amplifying community stories and voices
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Build and manage our lived experience co-production group ‘Metabolic Advisory Council’
Community Insight & Advocacy
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Functioning as the ‘internal expert’ on IMD communities for all MSUK team members
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Using our Contact Record Management system to log and manage community database to provide timely, relevant insight to team members when required
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Work with Head of Insight & Advocacy to engage and support communities in relation to timelines for insight work
Events & Campaigns
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Plan, organise, and execute online and in-person community events (support groups, awareness days, family meetups, annual conference)
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Collaborate with the team to deliver campaigns around awareness, fundraising, and education
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Work with Virtual Support Assistant to coordinate speakers, logistics, communications, and follow-ups for all events with
Relationship & Partnership Management
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Build and maintain relationships with other patient advocacy groups, charities, and health organisations
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Represent the charity at external events, meetings, and forums relevant to the rare disease space
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Seek opportunities for collaboration, knowledge sharing, and joint initiatives
Community Fundraising
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Work with Fundraising lead on community support for individual and events fundraising including event research, donor journey support and online promotion
Person Specification
Essential
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Experience managing online communities and/or social media platforms in a professional or volunteer capacity
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Excellent written and verbal communication skills
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Strong organisational skills and event planning experience
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Empathetic and sensitive to the lived experiences of patients and carers
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Ability to work independently, from home, and as part of a small, dynamic team
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Confident, keen to travel and enjoys in-person events and networking
Desirable
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Personal or professional experience within the rare disease, health, or charity sectors
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Experience managing partnerships or external relationships
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Familiarity with tools such as Canva, Mailchimp, Eventbrite, or similar
What We Offer
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A supportive and flexible working environment.
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Opportunities for personal and professional growth.
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The chance to make a tangible impact in the lives of people affected by rare diseases.