Chief Executive

We’re looking for a Chief Executive to deliver our ambitious new strategy and to inspire and lead Genetic Alliance UK’s talented and experienced team following a period of significant change. We are an alliance of over 230 charities and support groups whose collaborative aim is to work together to improve the lives of 3.5 million people in the UK affected by rare or genetic conditions. We run 2 long standing projects, Rare Disease UK and SWAN UK (syndromes without a name). 

We are looking for candidates with a personal or professional passion for driving improvements in the lives of people affected by rare or genetic conditions, who can bring relevant expertise and diverse perspectives to shape our work.

You will be a credible senior leader who listens and learns from the views of members, supporters and partners, and builds on the high profile and strong reputation of Genetic Alliance UK.

We are seeking to complement the skills of our senior team by recruiting a Chief Executive with expertise in business development and income generation, governance, strategic delivery, impact measurement, operational management, business planning and financial management. It’s a broad role and we’re interested to hear from a range of candidates with different experiences.

As Chief Executive at Genetic Alliance UK, you will have the opportunity to work in a cutting-edge environment, developing policy and research and working with leaders across government, science and industry. You will be able to bring positive benefit to countless lives.

If you have the drive, energy and relevant experience to lead our organisation towards achieving our ambitions for the genetic rare and undiagnosed community then we would like to hear from you. We want to hear from candidates from all walks of life, and we welcome applications from people with lived experience of rare or genetic conditions either directly or through a family member. People from minority ethnic backgrounds and men are currently under-represented on our staff, and we would welcome applicants who can bring either or both of these perspectives to our work.

Deadline for applications: 17.00 on Monday 1 July 2024

Find the full job description and details of how to apply at in the application pack.

First round interviews will take place by Zoom on Wednesday 10 2024 and Thursday 11 July 2024.  

We will interview a maximum of 2 final candidates face-to-face in London on Wednesday 17 July.