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:
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Supportive – Actively assist colleagues and stakeholders, fostering a culture of collaboration and reliability.
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Empathetic – Approach challenges with understanding, considering the impact on people internally and externally.
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Respectful – Ensure all communications and decisions uphold dignity and fairness, especially when handling sensitive matters.
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Community Focused – Make decisions that strengthen our community, ensuring all activity supports inclusive engagement and shared purpose.
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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:
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24-hour confidential Employee Assistance helpline
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Private health insurance
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Flexible hours
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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
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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.
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Coordinate logistics for in‑person and online events, including venue liaison, catering, accessibility arrangements, equipment, travel, accommodation and schedules.
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Ensure event details are accurately published and updated across relevant platforms (website, CRM, communications channels).
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Manage registration processes for all events and ensure attendees receive timely, accurate joining information.
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Support the organisation of regional meet‑ups and workshops, ensuring venues, facilitators and resources are in place.
2. Administration and Operational Delivery
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Maintain clear and accurate administrative systems, including event checklists, timelines, risk assessments and evaluation forms.
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Track planned expenditure and ensure costs align with budgets, escalating issues where necessary.
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Prepare and maintain event collateral (slides, handouts, resources, signage), ensuring accessibility and brand consistency.
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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
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Liaise with venues, suppliers, speakers, exhibitors and partners to ensure high quality event delivery.
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Develop positive working relationships with internal colleagues to ensure a joined-up programme across support, communications and scientific teams.
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Provide excellent customer service to participants, responding promptly and sensitively to enquiries, access requirements and logistical questions.
4. Community and Engagement Support
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Collaborate with Support Team colleagues to ensure events reflect community needs and priorities.
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Support the promotion of events through the Communications Officer, ensuring timely provision of copy, event information and updates.
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Encourage and support attendance from families, young people, professionals and community partners.
5. Data Management, Monitoring and Evaluation
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Ensure accurate data entry in CRM systems (eTapestry or similar) for attendee lists, engagement tracking and follow up actions.
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Collect and analyse feedback, producing short evaluation summaries to inform future planning.
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Track attendance, trends and logistical improvements, contributing to quarterly reporting.
6. Risk, Compliance and Quality Assurance
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Support event risk assessments and ensure compliance with safeguarding, accessibility and GDPR guidance.
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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)
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Event logistics prepared within agreed timelines
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Accurate event information published and updated within required timeframes
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Participant satisfaction and engagement measured through surveys
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Conference and event attendance targets met
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CRM data entry completed within 2 working days of events
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Budget expenditure tracked monthly with minimal variance
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Effective delivery of regional and online events aligned with pre-agreed schedule
Person Specification
Knowledge & Experience
Essential
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Experience organising in person events from start to finish for over 300 attendees.
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Experience liaising with suppliers, venues and speakers.
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Experience with CRM/data entry, with close attention to detail.
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Experience organising and hosting remote events.
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Understanding of hybrid events.
Desirable
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Experience in the charity sector.
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Knowledge of Duchenne or similar life-limiting conditions.
Skills & Abilities
Essential
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Strong interpersonal skills, with the ability to build trust, motivate teams and develop positive relationships with beneficiaries, staff, volunteers and external partners.
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Understanding of the importance of safeguarding around events.
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Exceptional communication skills.
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Excellent organisational and time management skills, with the ability to manage competing priorities and meet deadlines.
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Analytical and data literate, able to interpret performance data, identify trends, and use insight to drive improvement.
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Skilled in problem solving, with a proactive, solutions focused approach.
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Ability to be assertive while maintaining empathy, particularly when supporting teams dealing with emotionally complex situations.
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Digital proficiency including Microsoft Office, CRM systems and digital communication tools.
Attributes
Essential
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Emotionally intelligent, reflective and able to manage sensitive issues with empathy and professionalism.
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Values driven, compassionate and committed to improving the lives of individuals and families affected by long term or life-limiting conditions.
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Resilient and adaptable, able to navigate complexity.
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Creative, dynamic and innovative, with the ability to take ideas from concept to delivery.
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Demonstrable commitment to equity, diversity and inclusion.
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Personally, and professionally, responsible with high standards of integrity and accountability.
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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.
Position: Policy and Public Affairs Officer (Scotland)
Hours: Full-time, 35 hours a per-week
Contract: Permanent
Location: Home Based in Scotland
Salary: Starting from £26,384 per annum plus excellent benefits
Salary Band and Job Family: Band 1, Charity
You will start at our entry point salary of £26,384 per annum, increasing to £28,033 after 6 months service and satisfactory performance and to £29,682 after a further 6 months.
About us
We make sure people living with MS are at the centre of everything we do. And it’s this commitment that unites us across the UK.
Our strategy is based on what people affected by MS have told us is important to them. It gives us a clear and determined focus.
Our work is based on the hopes and aspirations of our MS community. Together we campaign at all levels, fund ground-breaking research and provide award winning support and information.
Our people are our greatest asset and the key to our success. We offer a vibrant, progressive working environment where you'll be able to make a difference.
About this job
We’re looking for an enthusiastic and talented policy and public affairs professional to join our team. You should have experience of working to develop policy and have the ability to communicate our position to a wide range of audiences across Scotland.
In this exciting role you will work with the MS community to influence change in public policy, continuing to make the case for improvements in the treatment, care and support of people affected by MS.
This is a fantastic opportunity for someone who understands the political and policy environment in Scotland, who has experience in external facing influencing roles, who is outcome-focused and delivers tangible results. The successful candidate will work closely with the MS community, the Scottish Policy and Communications team as well as key external partners such as MSPs and their teams.
Closing date for applications: 9:00 on Monday 1st of June
Interested?
PLEASE PRESS THE 'HOW TO APPLY' BUTTON FOR MORE INFORMATION.
Equal Opportunities
We particularly welcome applications from people with disabilities and or from ethnic minority backgrounds.
We’d be grateful if you downloaded and completed the equality and diversity monitoring form and submit it with your application.
Disability Confident Employer
We’re a Disability Confident Employer and we’re committed to promoting equality and diversity.
You can ask for reasonable adjustments as part of both our recruitment and new starter on-boarding processes.
If you need any help or adjustments to apply for this role, please contact us. You can also ask for the application materials to be sent to you in a different format. Such as for them to be sent to you by email or in a larger word format.
More about our employee benefits:
We have a wide range of employee benefits including (but not limited to):
Encouraging work life balance
- 38 days paid annual leave (including bank holidays), pro-rata for part-time
- More annual leave entitlement, based on length of employment
- Smart working options (with the opportunity to work remotely and find a smart working pattern that suits both you and us)
- Flexible working options
Caring for you and your family
- Generous sick pay entitlement
- More sick pay entitlement, based on length of employment
- Opportunity to buy and sell annual leave in each calendar year
- Free access to a GP virtually 24 hours a day/7 days a week allowing you unlimited advice, reassurance and where appropriate diagnosis
- Enhanced leave for new parents
- Free access to a confidential 24 hours a day/7 days a week helpline service for both you and your family with a specialist range of support and information
- Special leave options (such as up to 5 days paid leave for domestic or personal emergencies a year)
- 10 days paid disability leave a year, pro-rata for part-time
- 10 days paid carers’ leave a year, pro-rata for part-time
- Cycle to work scheme
- Death in service scheme
- New family-friendly benefits, including paid leave:
- In the event of miscarriage or still birth
- To support fertility treatments
- For antenatal appointments for both parents
Thinking about your finances
- Enhanced salary sacrifice pension scheme
- Discounted season ticket loan and interest-free emergency loans
- Give as you earn to support other charities of your choice before tax
- New employee portal including lifestyle savings vouchers and personal wellbeing
Enriching your life at work
- Personalised development plans with a wide range of training courses and opportunities to source additional training options with your line manager
- Yearly internal apprenticeship opportunities
- New, modern offices that embrace working together both in-person and remotely
- Various opportunities to influence how we internally operate (including surveys, and focus and committee groups)
- Active and supportive internal employee networking groups for collaboration and peer support
- 2 days paid leave a year for volunteering for MS Society activities during normal working hours (such as fundraising events, or campaigning in the local community)
- 2 days paid leave a year for volunteering with other charities during normal
Safeguarding
We’re committed to safeguarding and promoting the welfare of everyone who uses our services and we come into contact with.
This is regardless of Gender, Race, Disability, Sexual orientation, Religion or belief, Pregnancy, Gender reassignment.
We recognise our particular responsibility to make sure vulnerable adults and children are protected.
We have measures in place to protect everyone we come into contact with from abuse and maltreatment of all kinds.
Your right to work in the UK
You must have the right to work in the UK to work in paid employment with us. You’ll need to share documents showing you’re eligible to work in the UK if we offer you employment.
You can find the UK visas and permits granting you the right to work in the UK on the UK Government website. We currently don’t have a Sponsor Licence agreement with the Home Office and aren’t able to support you with your visa applications.
No agencies please.
To fund world-leading research, share the latest information and campaign for everyone's rights. Together we are a community. Together we can stop MS