Job Description

Job description

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

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