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Action Duchenne, Remote
£32,379 per year
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Remote
£32,379 per year
Full-time
Permanent
Job description

Introduction to Action Duchenne:

Action Duchenne supports, empower and equip every Duchenne Muscular Dystrophy 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.

Main Purpose of the Role:

To ensure the charity operates within a robust governance framework and maintains high standards of compliance, risk management, and operational efficiency. This role will lead on policy development, governance reporting, administration progression and process improvement to support strategic objectives and regulatory requirements.

 

Key Responsibilities

  • Governance and Compliance
    • Maintain and update governance policies and registers, and development of Standard Operating Procedures.
    • Act as the primary liaison for Board governance matters, including preparing Board papers, ensuring timely reporting and minuting.
    • Monitor compliance with charity law, GDPR, and other regulatory requirements.
    • Coordinate annual policy reviews and ensure staff adherence.
  • Risk and Audit
    • Maintain and update the organisational risk register for quarterly Board review.
    • Support internal audits and external compliance checks.
    • Develop and implement risk mitigation strategies.
  • Operational Efficiency
    • Review and streamline operational processes to improve efficiency, including IT and telephony, authorisations, filing and recruitment.
    • Support budget monitoring and reporting in collaboration with Finance.
    • Oversee contract management and supplier compliance.
  • Reporting and Data
    • Prepare governance and operational reports for the CEO and Board.
    • Ensure accurate documentation and record-keeping for governance purposes.
    • Be the organisation’s Data Protection Officer.
    • Minute team meetings.

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 the job description below. You can apply on our website, and the deadline for applications is 9am on Monday 16th March 2026.

Application resources
Organisation
Action Duchenne View profile Organisation type Registered Charity Company size 11 - 20

Action Duchenne is a charity providing holistic support to those living with Duchenne Muscular Dystrophy (Duchenne) and their families.

Action Duchenne logo Play
Staff.jpgWhatsApp-Image-2023-08-28-at-10.35.09-1-768x432.jpgWelcomeRemarksAudience-1-1-768x512.jpgJess-2-1-1024x683.jpg
Posted on: 01 March 2026
Closing date: 16 March 2026 at 09:00
Tags: Administration, Finance, Policy, Project Management, Operations, Compliance / Quality, CRM, Data Analysis, Data Protection, Database Management, Information Management, Insights, Logistics, Monitoring and Evaluation, Office Management, Recruitment, Risk Management, Governance / Management

The client requests no contact from agencies or media sales.