Genetic Alliance UK’s goal of improving the lives of 3.5 million people in the UK living with genetic and rare conditions is driven by the passion and expertise of our committed team. If you share our values and want to make a real difference, we want to hear from you.
We seek empathetic, skilled and passionate professionals who can help us achieve the vision and values set out in our current five-year strategy.
Genetic Alliance UK is an equal opportunities employer. Employment and progression are based solely on merit, competence and potential, and we welcome individuals who can bring diverse perspectives and professional expertise to our team. We strive to create a workplace where everyone feels valued, respected and able to achieve their full potential.
Many of our trustees and staff bring lived experience of genetic and rare conditions, either personally or through a close family member. We are a level 1 disability committed employer (find out more about the Disability Confident scheme here) and we are happy to discuss flexible working arrangements for staff who need adjustments to support them at work or have caring responsibilities.
If no vacancies are listed at the moment please check back regularly, or consider subscribing to our updates or getting in touch with us.
Director of Engagement and Impact
Shape the future of the voice of the rare condition community
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.
Director of Engagement and Impact
Salary: £55,167 – £63,654 (with new starters usually starting at the lower end of the range)
Location: Home-based, UK (occasional travel required)
Contract: Permanent, full-time (35 hours per week) with applications for up to 28 hours per week considered.
Closing date: 09:00 on Monday 22 Sept 2025
Director of Engagement and Impact job description
About Genetic Alliance UK
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
This is a new senior leadership position designed to strengthen our membership engagement, amplify our communications impact, and support a positive, collaborative working culture.
As part of our Senior Management Team, you will:
- Lead and develop our approach to engaging and supporting our diverse membership.
- Provide strategic oversight for all communications, ensuring our messages are clear, consistent and impactful across multiple audiences.
- Champion and embed systems for staff performance, development and wellbeing, ensuring our culture is inclusive, supportive, and sustainable.
You will oversee the Head of Membership and Communications, the Communications and Engagement Manager (SWAN UK), and two new posts (Communications Officer and Project Support Officer). You will also provide operational oversight of SWAN UK, and work closely with the Policy, Public Affairs and Research teams to maximise impact.
About you
We are looking for a strategic leader who combines a talent for building relationships with outstanding communication skills. You will bring experience of leading teams, delivering organisational change, and working effectively with diverse stakeholders. You will be comfortable navigating the needs of a membership organisation, and passionate about making a tangible difference for people living with rare conditions.
What we offer
- Generous pension (5% employer, 3% employee)
- 25 days annual leave plus bank holidays and full office closure over Christmas/New Year
- Flexible, home-based working with occasional UK travel
The opportunity to lead work that has a direct and lasting impact for people affected by rare conditions
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.
Closing date: 09:00 on Monday 22 Sept 2025
Interview dates: 8 and 9 October 2025