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Help Change the Future of Polycystic Kidney Disease Research
Patient & Public Involvement and Engagement (PPIE) Manager
PKD Charity
Remote (UK-based) | Part-time (22.5 hours / 3 days per week)
Salary: £33,000–£35,000 FTE pro rata (£19,800–£21,000 actual)
The PKD Charity is looking for an exceptional communicator and relationship-builder to lead patient involvement in groundbreaking PKD research.
This is not a standard engagement role.
You will help ensure that the voices, experiences and priorities of people living with polycystic kidney disease directly influence research, clinical studies and future healthcare decisions across the UK.
PKD affects around 70,000 people in the UK. It causes kidney failure, lifelong health complications and reduced life expectancy. There is currently no cure.
We believe research is stronger when patients are genuinely heard — not consulted as an afterthought.
That’s where you come in.
The Opportunity
As our Patient & Public Involvement and Engagement (PPIE) Manager, you’ll lead and shape involvement activity through the PKD Research Hub, working alongside patients, researchers, clinicians and partners to make research more inclusive, meaningful and impactful.
You’ll:
We’re Looking For Someone Who:
Experience in rare disease, kidney health or long-term conditions is welcomed but not essential.
Why Join Us?
At the PKD Charity, you’ll join a passionate national charity working to improve lives through:
This is a rare opportunity to shape a growing area of work with real national impact — while working flexibly as part of a supportive, mission-driven team.
What We Offer
✔ Fully remote working
✔ Flexible part-time hours (3 days / 22.5 hrs)
✔ 25 days annual leave pro rata + bank holidays
✔ Pension scheme
✔ Meaningful, purpose-driven work
✔ Opportunity to influence national research activity
Apply Now
For details on how to apply, please see the application pack.
Deadline 9am Monday 1st June. Interviews will provisionally be held online on Wednesday 10th June. However we will monitor applications on a rolling basis and may approach for interview at an earlier date. If we find the right candidate we may close the recruitment campaign at an earlier time, so we encourage you to get your applications in at the earliest opportunity.
The client requests no contact from agencies or media sales.
This role combines evidence-based policy development with impactful communications to drive meaningful progress towards gender equality in Wales. You will research the barriers to gender equality and develop clear policy recommendations – always through an intersectional lens. You will use the insights of this work to influence decision-makers, engage WEN’s diverse membership and shape public opinion to mobilise real change.
The ideal candidate will have a proven track record in researching and drafting effective and accessible writing and content for a wide range of audiences, including policy-makers, campaign supporters, and the wider public. You will know how to identify and build relationships with key stakeholders and partners, have strong political awareness, and the ability to think strategically. You will also need a good eye for detail and excellent self-management skills, with the ability to prioritise competing demands in a fast-paced environment.
If you are passionate about gender equality, motivated to make real change for women in Wales, and have excellent research and communication skills, this could be the role for you.
We particularly welcome applications from candidates who have lived experience of intersecting discrimination.
The client requests no contact from agencies or media sales.
About Adolescent Health Study
The Adolescent Health Study (AHS) (Registered Charity Number 1213337) is an ambitious new UKRI-funded initiative to establish a prospective, longitudinal population study that will generate a globally leading open science data platform and research resource. AHS aims to recruit at least 100,000 young people aged eight to 18 years from across the UK and to follow their mental and physical health and wellbeing over at least 10 years. It plans to collect data through questions and measures; to obtain bio-samples for a wide range of genomic and other high-throughput assays; and to capture linked data relevant to health and wellbeing from participants’ health, education and other administrative records.
There will be a strong emphasis on engaging with and involving young people, schools, parents and other relevant stakeholders in the design and delivery of the study, as well as on including young people that represent as wide as possible a range of backgrounds, experiences and characteristics. AHS will focus on enabling a wide range of research, including studies of the critical biological and social developments that occur during the transition from childhood to adulthood and the determinants of both mental and physical health and wellbeing in adolescents and young adults.
Purpose of the post
The Engagement and Involvement Lead will engage with young people, families, schools and other interest-holders in the process of designing, delivering and ensuring the best outputs from the Adolescent Health Study, and is critical for the success of the project. We are at the early stages of laying the foundations for this and in this new role we are seeking an experienced and passionate individual to co-ordinate and lead AHS’s cross-UK participant and public involvement and engagement activities.
This is a role that requires high levels of confidence, autonomy, enthusiasm and skill. The postholder will be responsible for delivering the project’s new Engagement and Involvement Strategy, including: coordinating a Young Persons’ Advisory Group for AHS; developing and delivering AHS public engagement and involvement activities; outsourcing and supervising engagement and involvement activities that are better provided by external partners; scoping and advising on which routes for involvement and engagement activities are best suited to different tasks.
Main responsibilities
Planning & strategy delivery
Practical engagement and involvement
Team support
Wider
Knowledge, skills and experience
Essential criteria
Engagement and involvement
Other essential criteria
Desirable criteria
Dimensions
Application Process
This post is subject to receipt of satisfactory references, an enhanced DBS check and right to work in the UK (visa sponsorship is not available).
Please apply via CharityJob, making sure to answer the screening questions in full.
The closing date for this position is midnight on Sunday 31st May.
Interviews are currently expected to be held Wednesday 1st/Thursday 2nd July.
Equal Opportunities Policy Statement
AHS is an equal opportunities employer, and as such aims to treat all employees, consultants and applicants fairly. AHS is an equal opportunities employer, and as such aims to treat all employees, consultants and applicants fairly. It is our policy to provide employment equality to all, irrespective of age, disability, gender identity or expression, marital or civil partnership status, pregnancy or maternity, race, religion or belief, sex, or sexual orientation.
Beyond these protected characteristics, we acknowledge the importance of socio-economic background, childcare and caring responsibilities, educational background, neurodiversity, and any other factors that shape an individual’s identity and opportunities. We strive to create an environment where all colleagues feel valued, supported, and able to contribute fully.
Values
It is an exciting time for the Adolescent Health Study (AHS) as we establish our senior leadership team and begin to plan the pilot studies. As the senior executive team evolves, the AHS values will be grounded in inclusivity, integrity, accountability, and collaboration.
Please ensure you answer each screening question in full, while staying within the specified word limits.
We are seeking a talented and creative Communications Officer to join our dynamic team to cover a period of maternity leave. The Communications Officer will play a crucial role in enhancing the ASE’s external and internal communication efforts. The ideal candidate will be a talented multitasker with excellent communication skills, a strong grasp of social media platforms, maintaining website content using a CMS, graphic design expertise, and a keen eye for detail. This individual will be responsible for enhancing our brand presence, engaging our audience, and maintaining consistent and effective communication across various channels. Understanding that this is a broad role, if you are experienced in one area but would need a bit more guidance in another then we are still interested to hear from you.
Mission: to promote excellence in science education
The client requests no contact from agencies or media sales.
What does it take to lead the national voice for special schools at a time of real change?
Chief Executive Officer (CEO) – National Association of Special Schools (NASS)
National – home-based, with regular travel across England and Wales, particularly London
£90,000–£110,000 per annum
Full-time, permanent.
About NASS
The National Association of Special Schools (NASS) is the membership association for special schools in England and Wales. We bring together independent special schools, non-maintained special schools, special academies, maintained special schools and multi-academy trusts with specialist provision.
We exist to inform, support and represent our members, helping specialist schools improve outcomes for children and young people with SEND and secure the place of specialist provision within the wider education system. NASS is known for being accessible, responsive and personal, combining national influence with practical support that members value as timely, human and trustworthy.
This is a pivotal moment for the organisation. In February this year, the Department for Education published a major white paper on SEND reform which will require NASS to both influence national policy on behalf of our members and children and young people, as well as support them to navigate the changes. Our new CEO will need to review our strategy while building on our strong platform and momentum to further deepen our influence and strengthen our internal capacity.
As our next Chief Executive, you will:
Why NASS?
Application
For full details of the role including how to apply, please download the full appointment brief. For an informal and confidential conversation about this position, please contact Jenny Hills at Harris Hill via apply button with times to speak and (optional but appreciated) a CV or professional profile which will be treated with the strictest confidence.
Closing date for applications: 9am, Monday 8th June 2026
As leading charity recruitment specialists and a certified B Corp, Harris Hill is committed to high and ever-improving standards of equitable and inclusive recruitment. We actively welcome applications from all sections of the community regardless of age, disability, gender, race, religion, sexuality and other protected characteristics.
About the Nature Friendly Farming Network (NFFN)
The Nature Friendly Farming Network is a UK-wide, farmer-led organisation working to restore the balance between farming and nature.
We support farmers by sharing practical knowledge, resources and case studies that help boost food production, protect wildlife, and build climate resilience.
We influence policy to secure fair rewards for farmers who look after the environment, and we connect thousands of like-minded farmers across the UK through knowledge sharing, events and campaigns.
Membership is free and open to farmers, the public and organisations.
About the role
We are looking for a Parliamentary Engagement Officer to strengthen our engagement with policymakers across the UK.
This is an exciting opportunity to work at the intersection of farming, environment and policy. You will play a key role in ensuring that farmer experience and evidence are reflected in parliamentary discussions, helping to shape conversations that impact the future of farming.
Working directly with the Chief Executive and closely with the policy team, you will monitor parliamentary activity, identify opportunities for engagement, and support timely and well-informed interaction with MPs, peers and their teams. You will also work across the organisation, including with country teams and farmer steering groups, to ensure engagement reflects priorities across all UK nations.
This is a practical, fast-paced role suited to someone who is organised, politically aware, and able to respond quickly to emerging opportunities.
Key responsibilities
Monitor parliamentary activity across Westminster and the devolved parliaments, identifying relevant debates, questions, committees and opportunities for engagement
Maintain a forward view on key parliamentary activity and upcoming moments of influence
Produce and circulate clear, concise briefings on parliamentary activity and recommended areas for engagement
Draft and support the submission of parliamentary questions, briefings and lines for MPs, peers and their staff
Build and maintain relationships with MPs, peers, advisers and parliamentary staff across parties
Support coordinated engagement with political stakeholders, ensuring activity is timely and aligned with organisational priorities
Work with colleagues and partners to support effective and aligned parliamentary engagement
Support relationships between farmers and parliamentarians, including organising farm visits and meetings where appropriate
Translate farmer experience and insights into clear and practical input for parliamentary engagement
Support the planning and delivery of parliamentary events, meetings and roundtables
Organise meetings with MPs, peers and advisers, including preparing briefings and follow-up actions
Maintain accurate records of parliamentary contacts and engagement activity, and support internal reporting
Contribute to campaign activity and wider organisational work where required
What we are looking for
You will bring:
A working understanding of how the UK Parliament and devolved legislatures operate, and how to engage effectively with those processes
Experience engaging with political, policy or stakeholder environments
Strong writing skills, with the ability to produce clear and concise briefings and summaries
Excellent organisational skills and attention to detail
The ability to manage competing priorities and respond quickly to emerging opportunities
Strong communication and interpersonal skills, with the ability to build effective working relationships
The ability to translate complex or real-world information into clear, practical input
Confidence working independently in a remote team environment
An interest in farming, environmental issues or public policy
Additional information
The NFFN is a politically neutral organisation. This role requires the ability to engage constructively with stakeholders across all political parties and UK nations.
The client requests no contact from agencies or media sales.
We are looking for an all-round Communications Manager to join our small team. You'll be able to build on your existing experience with some exciting upcoming projects that will have direct impact on the head and neck cancer community – as well as generating awareness across the general public. We have a unique opportunity to develop our organisation to create maximum impact for head and neck cancer patients and their families while staying true to our origins. There’s a lot of work to do.
Main responsibilities and duties:
Please apply with a copy of your CV, along with a statement (maximum two pages) outlining your suitability for the role.
The client requests no contact from agencies or media sales.
Are you a creative digital campaigner who can turn powerful stories into content that sparks action, builds movements, and drives change to help save lives and stop economic abuse?
About the role
We are looking for an exceptional candidate to play a central role in the delivery of Surviving Economic Abuse’s new digital engagement strategy by producing high-quality, impactful communications and compelling campaigns to extend our reach and to engage, inform and mobilise our audiences.
You will be responsible for managing and growing our digital presence across social media and ensuring this translates into action through our website and newsletters. This will include creating content tailored to victim-survivors and their family and friends, financial services professionals, policymakers, funders and other stakeholders.
As part of this role, you will help us develop and deliver digital campaigns that amplify our campaigning and policy work, as well as deliver communications to support our fundraising, consultancy and training.
About you
We’re looking for someone with proven experience running social media for a brand, organisation or campaign, with demonstrable results such as audience growth, reach, engagement or conversion. You’ll understand how campaigning and activism work, and how to mobilise supporters from diverse backgrounds to help drive meaningful change.
You’ll be a confident digital campaigner who knows how to make an impact across multiple platforms, especially Instagram, TikTok and other video first channels. You’ll have a strong understanding of trends, formats and algorithms, and know how to use them to create scroll stopping content that motivates people to take action.
This role is ideal for someone with bags of initiative, strong creative instincts, and the ability to turn complex issues into compelling digital content tailored to engage and mobilise different audiences.
If you’re excited by the opportunity to use your creativity, storytelling and digital campaign skills to amplify survivor voices, drive real-world impact and help end economic abuse, we’d love to hear from you.
What we offer
To apply
Please apply via our website.
This post is only open to women applicants, as being a woman is considered a genuine occupational requirement under Schedule 9, Paragraph 1 of the Equality Act 2010.
Applications open from 6 May and close at 11.59pm on 26 May 2026. Interviews will take place week commencing 15 June 2026.
Direct applications only – no agencies please.
Surviving Economic Abuse (SEA) is committed to developing an inclusive team which reflects the diversity of the communities we support. Our culture celebrates diverse voices, and we particularly encourage applications from Black and minoritised applicants and disabled applicants who are under-represented at SEA.
SEA is a Disability Confident Committed, and Kinship Friendly Employer.
The client requests no contact from agencies or media sales.
This is a new role leading on engagement in the Transport for the South East area, playing a vital role in building and strengthening local networks, supporting grassroots campaigning, and ensuring that disabled people’s experiences inform both regional and national influencing work. You’ll organise campaigns and forums, represent Transport for All at events, and work with service providers and councils to make transport fairer and more equitable.
We are a small, committed and disabled-led team working to make sure that disabled people’s voices are heard in politics, the media and beyond. This role is central to ensuring lived experience drives systemic change in London’s transport system.
You must be disabled and live in the South East of England to apply for this role
This role has a genuine occupational requirement of lived experience of disability. This explicitly includes those of us who are Deaf, neurodivergent, chronically ill, have a mental health condition, have age-related impairments, and people with both visible and non-visible impairments. If you do not meet the genuine occupational requirement, your application will not be shortlisted for an interview.
Transport Justice for disabled people.
The client requests no contact from agencies or media sales.
Are you a passionate and creative communications expert with experience in the charity sector, excellent relationship-building abilities and a crafter of persuasive and powerful story telling that resonates with a variety of audiences? Can you deliver compelling communications and campaigns to help increase our income generation and raise our profile with potential supporters and champions? Do you want to be part of a dynamic, ambitious, joyful organisation? Then this could be the role for you!
We are going through an exciting growth phase at the Choir with No Name with new choirs launching and an ambitious strategy to increase our choirs across the UK from six to thirty by 2033. We are investing in our fundraising and comms function to grow our income in line with our bold strategy and delivery plans.
About us
The Choir with No Name (CWNN) has been building supportive choir communities involving people impacted by homelessness and marginalisation since 2008. We were founded on the premise that singing makes you feel good; it is a welcome respite from the challenges life throws at you, and helps build confidence, skills and genuine, long-lasting friendships.
“I’m so happy to have found CWNN. It’s made such a difference to me. I’ve broken a 25-year cycle with drugs and honestly, I don’t think I could have done it without the choir. I’m not existing anymore, I’m living, and that’s huge.”
- Richard, choir member
Your role
You will be responsible for the management, development and delivery of marketing and communications to support CWNN’s fundraising strategy. You’ll work alongside our Development Manager to create compelling fundraising campaigns, content and communications, growing engagement from individuals, companies, community fundraisers and potential funders while simultaneously raising our profile among stakeholders through strategic communications and marketing plans. This work includes:
Work alongside our Development Manager to create and deliver impactful and innovative fundraising strategies including our public appeals, challenge events and local fundraising campaigns.
Developing and implementing communications strategies to promote CWNN’s work, managing our social media platforms and external comms to ensure they reflect our strategic goals and values.
Create engaging digital content for our website and social media including written copy, video and graphics, to drive engagement, increase awareness and generate income.
Capturing and analysing key campaign engagement KPIs to inform future strategies and approaches to best engage existing and new audiences.
Produce quarterly comms impact overview for senior management and trustee reports.
Create marketing materials for external use, eg. corporate pitch documents, fundraising packs, gig programmes, flyers and posters using Canva.
Co-creating case studies, supporting members to share their stories, their way, amplifying their voices and demonstrating the impact of our choirs to stakeholders.
Co-lead our co-produced ‘Digital Storytellers’ programme with our Community Participation Manager, supporting members to manage their own local social media accounts, sharing their stories and raising awareness of their choirs to new audiences.
Maintain, organise and populate CWNN’s media library and YouTube channel.
Write and distribute press releases to both regional and national press and media, fielding media enquiries and building our media contacts.
Oversight of the day to day content management and maintenance of the website
Co-ordinate our internal communications programme and internal newsletter, working with senior leadership team.
Carry out any other tasks that arise that are within the scope and purpose of the post as requested by your line manager
About you
Essential:
Desirable:
We are an equal opportunity employer and firmly believe that each team member can provide a unique perspective and valuable contribution to the lives of the people we work with, and applications from individuals are encouraged regardless of age, disability, sex, gender, sexual orientation, pregnancy and maternity, race, ethnicity, religion or belief. We particularly welcome applications from people with lived experience of homelessness. We follow an anonymous recruitment process. CVs will be requested at interview stage.
For full job description and details on how to apply, click on 'redirect to recruiter' at the top of the page.
The client requests no contact from agencies or media sales.
About Action Duchenne
Action Duchenne supports, empowers and equips every DMD community in their journey from diagnosis and beyond.
Duchenne Muscular Dystrophy (DMD) is a muscle wasting condition for which there is no cure, but we journey alongside communities to empower them and provide information for them to make informed decisions. Action Duchenne has a team of passionate, supportive staff who are keen to do more for families living with Duchenne and has a number of staff with direct lived experience.
At Action Duchenne, values are more than words—they shape how we work and interact every day. For this role, we are looking for a team member who can reflect our values:
Supportive – Actively assist colleagues and stakeholders, fostering a culture of collaboration and reliability.
Empathetic – Approach challenges with understanding, considering the impact on people internally and externally.
Respectful – Ensure all communications and decisions uphold dignity and fairness, especially when handling sensitive matters.
Community Focused – Make decisions that strengthen our community, ensuring all activity supports inclusive engagement and shared purpose.
Inclusive – Promote accessibility and equity, ensuring everyone feels valued and heard.
The Events Officer will embody these values in every aspect of planning, delivering and evaluating events.
What we offer:
24-hour confidential Employee Assistance helpline
Private health insurance
Flexible hours
5% employer pension contribution
Main Purpose of the Role
This new role aims to support the design, coordination and delivery of Action Duchenne’s events portfolio, including the Annual Community Summit, regional meetups, workshops, and online events. The role will ensure smooth operational delivery, high‑ quality participant experiences, accessible information, and effective logistics‑ and supplier coordination.
This role contributes directly to our organisational impact by ensuring families, young people, professionals and partners have access to engaging, supportive and well managed events. This is a brilliant opportunity for someone who enjoys a challenge, is incredibly organised with excellent project management skills, close attention to detail, creativity and a passion for supporting every DMD community.
Specific Tasks
1. Event Coordination and Logistics
Support the planning and delivery of the Annual Community Summit, working closely with the Chief Scientific Officer, Director of Fundraising and Communications, and wider team.
Coordinate logistics for in‑person and online events, including venue liaison, catering, accessibility arrangements, equipment, travel, accommodation and schedules.
Ensure event details are accurately published and updated across relevant platforms (website, CRM, communications channels).
Manage registration processes for all events and ensure attendees receive timely, accurate joining information.
Support the organisation of regional meet‑ups and workshops, ensuring venues, facilitators and resources are in place.
2. Administration and Operational Delivery
Maintain clear and accurate administrative systems, including event checklists, timelines, risk assessments and evaluation forms.
Track planned expenditure and ensure costs align with budgets, escalating issues where necessary.
Prepare and maintain event collateral (slides, handouts, resources, signage), ensuring accessibility and brand consistency.
Provide administrative and practical support during events (both online and in person), including setting up webinar sessions and coordinating pre and post event meetings internally.
3. Stakeholder and Supplier Management
Liaise with venues, suppliers, speakers, exhibitors and partners to ensure high quality event delivery.
Develop positive working relationships with internal colleagues to ensure a joined-up programme across support, communications and scientific teams.
Provide excellent customer service to participants, responding promptly and sensitively to enquiries, access requirements and logistical questions.
4. Community and Engagement Support
Collaborate with Support Team colleagues to ensure events reflect community needs and priorities.
Support the promotion of events through the Communications Officer, ensuring timely provision of copy, event information and updates.
Encourage and support attendance from families, young people, professionals and community partners.
5. Data Management, Monitoring and Evaluation
Ensure accurate data entry in CRM systems (eTapestry or similar) for attendee lists, engagement tracking and follow up actions.
Collect and analyse feedback, producing short evaluation summaries to inform future planning.
Track attendance, trends and logistical improvements, contributing to quarterly reporting.
6. Risk, Compliance and Quality Assurance
Support event risk assessments and ensure compliance with safeguarding, accessibility and GDPR guidance.
Ensure that content and delivery meet Action Duchenne’s quality standards and reflect the needs of families affected by Duchenne.
NB This is not an exhaustive list, the role holder will be asked to carry out additional tasks as required for the Team’s successful service delivery. Such tasks will always be reasonable and broadly in line with current knowledge levels and skill sets.
Key Performance Indicators (KPIs)
Event logistics prepared within agreed timelines
Accurate event information published and updated within required timeframes
Participant satisfaction and engagement measured through surveys
Conference and event attendance targets met
CRM data entry completed within 2 working days of events
Budget expenditure tracked monthly with minimal variance
Effective delivery of regional and online events aligned with pre-agreed schedule
Person Specification
Knowledge & Experience
Essential
Experience organising in person events from start to finish for over 300 attendees.
Experience liaising with suppliers, venues and speakers.
Experience with CRM/data entry, with close attention to detail.
Experience organising and hosting remote events.
Understanding of hybrid events.
Desirable
Experience in the charity sector.
Knowledge of Duchenne or similar life-limiting conditions.
Skills & Abilities
Essential
Strong interpersonal skills, with the ability to build trust, motivate teams and develop positive relationships with beneficiaries, staff, volunteers and external partners.
Understanding of the importance of safeguarding around events.
Exceptional communication skills.
Excellent organisational and time management skills, with the ability to manage competing priorities and meet deadlines.
Analytical and data literate, able to interpret performance data, identify trends, and use insight to drive improvement.
Skilled in problem solving, with a proactive, solutions focused approach.
Ability to be assertive while maintaining empathy, particularly when supporting teams dealing with emotionally complex situations.
Digital proficiency including Microsoft Office, CRM systems and digital communication tools.
Attributes
Essential
Emotionally intelligent, reflective and able to manage sensitive issues with empathy and professionalism.
Values driven, compassionate and committed to improving the lives of individuals and families affected by long term or life-limiting conditions.
Resilient and adaptable, able to navigate complexity.
Creative, dynamic and innovative, with the ability to take ideas from concept to delivery.
Demonstrable commitment to equity, diversity and inclusion.
Personally, and professionally, responsible with high standards of integrity and accountability.
A sense of humour and the ability to bring warmth and humanity to the role.
Closing date: 25 May 2026 at 9am, with first round, online interviews aiming to take place in week commencing 8th June.
Action Duchenne is a charity providing holistic support to those living with Duchenne Muscular Dystrophy (Duchenne) and their families.



The client requests no contact from agencies or media sales.
Transport for All has a strong reputation for leading the debate and advocating for change to improve the journeys made by disabled people. This role presents an opportunity for a strong leader with the commitment, enthusiasm and expertise to build on our success.
Our Chief Executive will be responsible for continuing to delivering the remainder of our 5-year strategy, whilst horizon-scanning to work with the team and wider DPO community to engage in the opportunities and changes ahead. We’re a small team and this is a wide-ranging role which includes:
• Representing the voice of the 16 million+ people in the disabled community by influencing policy and infrastructure decision-makers through our campaigns.
• Overseeing a highly regarded policy and public affairs function with associated communications and stakeholder engagement, maintaining our high profile and reputation with national and local governments.
• Ensuring the charity’s funding is robust and sustainable, looking at how we can diversify our income and direct it towards what matters through continuing to deliver our strategy and planning for our future.
• Overall responsibility for our successful training, research and consultancy business, building partnerships and further growth. This includes the National Accessible Transport Survey.
• Championing our award-winning support services for disabled people.
• Leading our expert teams through a period of growth and consolidation, embedding a strong organisational culture and matching our structure and systems to our upcoming challenges and increasing size.
You will report to and be supported by a well-functioning and committed Board of Trustees who are professionals with experience of working in the charity and transport sectors, as well as finance, legal and government backgrounds.
Transport Justice for disabled people.
The client requests no contact from agencies or media sales.
This is a grant funded role, fixed term for two years, with the opportunity for conversion to a permanent role should funding allow.
Main Purpose of the Role:
To provide proactive, emotional, and practical support to families and individuals affected by Duchenne Muscular Dystrophy (DMD) across Scotland. The role will focus on early engagement, wellbeing assessment, community building, and delivery of workshops and events, while ensuring accurate tracking of support outcomes and data.
The successful candidate will also lead on support for young people living with Duchenne during 2 key transition points (primary to secondary school stage and moving into adulthood). They will work closely with the England-based Transitions Coordinator to deliver a joined-up programme of support across the UK.
Specific Tasks:
1. Proactive Family Support
2. Transitions Support
· Lead transition support across all nations, with a focus on Scotland, for children and young people facing key life changes, including:
· Moving between educational settings such as primary to secondary
· Transitioning from paediatric to adult health services
· Changes in mobility and independence (e.g. transitioning to using powerchairs)
· You will lead, but expected to work collaboratively with the England-based Transition Coordinator to ensure consistency and continuity of support across the UK
· Develop resources, guidance, and workshops to support families through transitions
3. Wellbeing Tracking and Outcome Measurement
· Administer wellbeing questionnaires and record scores across key domains (e.g. physical health, emotional wellbeing, financial security)
· Collaborate with families to co-create action plans and track progress
· Ensure all data is entered into CRM (E-Tapestry or similar) within the allotted timeframe, i.e. immediately after or during the call.
4. Community Engagement and Event Delivery
· Organise and deliver regional meetups (minimum one per quarter)
· Facilitate support groups (virtual and in-person) for parents, young people, and extended family
· Support delivery of workshops and events aligned with programme schedule (e.g. music, life skills, employability)
5. Stakeholder Collaboration
· Liaise with external organisations including NHS care advisors and clinics, local authorities, counselling services, and other charities
· Represent Action Duchenne in Scotland and build relationships with local networks
6. Administration and Reporting
· Maintain accurate records of all interactions and support provided
· Contribute to quarterly reporting on activity delivery, capacity utilisation, and family impact
· Support development of CRM processes and service delivery improvements
7. Key Performance Indicators (KPIs):
· New contact acknowledgement email: within 3 working days
· New contact follow-up call: within 7–10 working days
· Families contacted per week: 12–15 hours of direct contact
· Regional meetups: 1 per quarter
· Support groups delivered: 9–12 per year
· CRM data entry: within 24 hours of interaction
· Family outcomes tracked: via wellbeing questionnaire and action plan
· Transition support delivered: tracked through engagement, resources, and feedback
NB This is not an exhaustive list, the role holder will be asked to carry out additional tasks as required for the Team’s successful service delivery. Such tasks will always be reasonable and broadly in line with current knowledge levels and skill sets.
Please find below the job specification, including required skills and qualifications.
Action Duchenne is a charity providing holistic support to those living with Duchenne Muscular Dystrophy (Duchenne) and their families.



The client requests no contact from agencies or media sales.
We are recruiting for three Funding Officers, one permanent and two 12-month fixed term contract roles to join our Funding team in Wales.
Please put in your supporting statement which role you would like to be considered for.
You will join our friendly team and work alongside our colleagues in Wales and across the UK. Depending on your location and preference, you can work from home or a combination of home working and office working in our Newtown or Cardiff offices.
As a funding officer you will assess requests for funding and manage grants using local knowledge, best practice, thematic expertise, and the experience of customers and stakeholders to improve our grant making and inform our decision making. By working closely with people and communities, you will understand what matters to them and where our funding can make the biggest difference.
You will be responsible for supporting local people and communities across Wales, and have a strong understanding of our vision, being able to adapt your approach to the wishes of the people you are working with. You’ll also need to support our stakeholders, helping them to make connections that will help them achieve their goals.
You will be responsible for the pipeline of projects, understanding and responding to the different needs of our customers by providing advice and considered feedback, and be willing to have challenging but constructive conversations. Funding Officers will ensure our grant management and assessment play an effective part in contributing to the Fund’s knowledge and learning as a grant maker. You will manage your own caseload, liaise with grant recipients, undertake project visits, identify and manage risk, supporting organisations to deliver their projects and measure their impact.
Interview Date: Week commencing 15th June 2026
Location: Wales (Cardiff/ Newtown) – Hybrid working (a combination of office working, home working and working in community). We are open to a conversation on flexible working and job share.
We will be hosting a briefing session on Thursday 14th May, 12pm. To register for the session or to ask any questions about the recruitment process, please email the recruitment team.
If you would like an informal conversation about the role specifically, please contact the recruitment team.
How to apply:
Upload your CV in word format and write a supporting statement (1000 words) with the following criteria, we will use this to score your application.
Essential criteria
Desirable criteria
Equity, Diversity and Inclusion
Communities in the UK come in all shapes and sizes. National Lottery funding is for everyone – therefore, we are committed to equity, diversity and inclusion and we work hard to ensure our funding reaches where it is needed.
We also believe our people should represent the communities, organisations and individuals we work with. That’s why The National Lottery Community Fund is committed to being an inclusive employer and a great place to work. We recognise and celebrate the fact that our people come from diverse backgrounds. We positively welcome applications from people from ethnic minority backgrounds, people with disabilities or longstanding health conditions, people who are LGBTQ+, and people from different socio-economic and educational backgrounds, as well as people of all ages.
As a Disability Confident Employer, we take a proactive approach in making reasonable adjustments, if needed, throughout the recruitment process and during employment. (This can be related to a physical and mental health condition.)
It starts with community.
The client requests no contact from agencies or media sales.