Director of Engagement and Impact

Genetic Alliance UK

Hours
35 hours per week

Salary
£55,167 - £63,654 per year

About the Organisation

Genetic Alliance UK is the national charity working to improve the lives of the 3.5 million people in the UK affected by genetic, rare, and undiagnosed conditions. We are an alliance of over 220 charities and support groups, bringing together patient voices to campaign for timely diagnosis, better care, and improved access to treatments. We host Rare Disease UK and SWAN UK, and lead national activity for Rare Disease Day.

About the role

Genetic Alliance UK is looking for an exceptional Director of Engagement and Impact to transform how we connect with our 220+ member organisations, communicate our mission, and foster a thriving, supportive team culture. If you’re a strategic leader with a gift for building relationships, crafting compelling messages, and creating positive change, this is your opportunity to make a lasting difference for the 3.5 million people in the UK affected by genetic, rare and undiagnosed conditions. This is a new senior leadership position designed to strengthen our membership engagement, amplify our communications impact, and support a positive, collaborative working culture.

Responsibilities

Engaging Our Members and Wider Stakeholders:

• Direct and oversee the development of our approach to working with more than 220 diverse member organisations, ensuring they are offered new opportunities to share our platform and engage with our work.
• Direct and oversee the move from a ‘few sizes fit all’ approach to working with our members to a more comprehensive approach to inclusion.
• Grow our membership and broader audiences in a sustainable way that recognises the diversity of the UK rare condition community.
• Ensure systems and processes enable high-quality member experience, engagement, and data use.
• Work with the Policy and Public Affairs Team to ensure our members are fully involved in campaigns such as Rare Disease Day, providing maximum impact.
• Work with the Research Team to ensure as many members as possible feel involved in research opportunities.
• Provide operational oversight of the SWAN UK project to ensure high standards, project delivery, and safeguarding compliance.
• Contribute to the work to find a long-term home for the SWAN UK community and play a role in change management to ensure that the community is well-supported through this process.

Delivering Impact Through Effective Communications:

• Provide strategic leadership to deliver coherent and cohesive communications from across the organisation to our wide range of stakeholders, reflecting our ambition and amplifying our impact.
• Improve consistency and planning across organisational communications activity.
• Take a strategic approach to balance approaches to communicating about:
  • Policy outputs
  • Public affairs activities
  • Research team outputs and activities
  • Urgent messaging responding to government or media events
  • Our members’ activities
  • Supporting the whole team to collaborate on effective communications to ensure maximum impact and deliver accurate communication on complex topics.
  • Direct and oversee the organisation’s relationship with individuals with rare conditions.
  • Ensure the organisation’s communications tools support income generation activity.

Fostering Internal Development and Culture:

• Select, implement, and oversee staff development systems, performance review processes, and cultural alignment.
• Select, implement, and oversee performance and development frameworks for staff that align with organisational values.
• Ensure necessary updates to the staff handbook and internal policies in collaboration with SMT.
• Build on the supportive culture within the organisation to create sustainable staff training and development practices.
• Promote well-being and support an inclusive working culture across the remote team environment.
• Liaise with external HR providers to keep our HR function and processes up to date.
• Disseminate project management approaches, proportionate reporting, and internal communication processes to support frequent collaboration within a small team.

Team Oversight:

• Provide line management for the Head of Membership and Communications.
• Oversee a team comprising the Head of Membership and Communications, the Communications and Engagement Manager (SWAN UK), and two posts to be filled: a communications officer and a project support officer.

Senior Management:

• As part of the Senior Management Team (comprising this role, Director of Research, and Chief Executive) contribute to the successful running of the charity by:
  • Overseeing the delivery of the strategy and reporting on its implementation to the Board of Trustees.
  • Contributing to financial oversight of project budgets, team members, and activities within the remit of this post, including banking duties.
  • Work with the Board of Trustees to ensure compliance with legal and regulatory requirements.
  • Prepare and present papers to the Board of Trustees.
  • Foster a positive and inclusive workspace culture.
  • Ensure day-to-day operations run smoothly and efficiently.
  • Identify and troubleshoot problems and conceive solutions.
  • Carrying out other duties as required.

Skills, Competencies & Experience

Essential Qualities, Skills & Experience:

• Experience of senior leadership or management roles involving multiple stakeholders or partners, ideally in the voluntary, public, or health sector.
• Proven ability to lead change with sensitivity, transparency, and strategic vision.
• Strong leadership and people management skills, inspiring and coordinating multidisciplinary teams.
• Exceptional written and verbal communication skills, including the ability to communicate complex issues clearly.
• Experience in growing and sustaining membership or audience engagement.
• Expertise in stakeholder engagement strategies.
• Experience building positive, collaborative workplace culture.
• Advanced strategic communications skills, including campaign planning, coordinating outputs across teams, and ensuring consistent messaging across multiple platforms.
• Ability to use data and CRM systems to inform decision-making and measure engagement.
• Strong project management skills with the ability to prioritise and deliver multiple initiatives.
• Excellent interpersonal and communication skills, written and verbal, with the ability to convey complex issues clearly.
• Demonstrated ability to work collaboratively in hybrid or remote settings while making clear, timely decisions.
• Commitment to equity, diversity, and inclusion.
• Solutions-focused, adaptable, and aligned with Genetic Alliance UK’s mission.

Desirable Qualities, Skills & Experience:

• Experience in membership-based or support-focused organisations, ideally within the health, research, genetic, or rare condition sectors.
• Strong understanding of the UK health landscape, including NHS structures and the rare condition charity sector.
• Experience growing membership or audiences sustainably and in line with organisational values.
• Familiarity with safeguarding in community engagement contexts.
• Track record in designing and embedding performance systems or staff development processes.

Compensation & Benefits

• 25 days annual leave plus bank holidays and full office closure over Christmas/New Year
• Generous pension 5% employer, 3% employee

Working locations

• Home-based
• Occasional travel required in the UK

How to apply

• Please send your CV and a supporting statement outlining how you meet the person specification to [email protected]. Please include "Director of Engagement and Impact" in the subject line.
• If you have any questions, please get in touch at [email protected]. Applications that do not follow these instructions will not be considered. Application deadline 09:00 on Monday, 22nd Sept 2025

Interviews

• Interview dates: 8th and 9th October 2025

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