Programme director boys jobs

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 

• Initiate contact with newly registered families within agreed timeframes (email within 3 working days, call within 7–10 working days) 

• Contact to be made to all registered Action Duchenne members, knows to us in Scotland, to ensure the current support offer is clear  

• Provide ongoing support tailored to individual needs, including emotional wellbeing, physical health, housing, financial security, self-esteem and respect, decision-making, social engagement, quality of life, and access to care 

• Use the Action Duchenne Assessment Form and Action Plan to identify and respond to areas of concern 

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.

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.