Genetic Alliance UK is seeking a new Chief Executive

We are seeking a new Chief Executive. Additional information below and on our Job Vacancies page.

Genetic Alliance UK is looking for a new Chief Executive with strong business skills to inspire and lead the charity after a period of major change.  

Genetic Alliance UK is an alliance of over 230 charities and support groups working together to improve the lives of 3.5 million people in the UK affected by rare or genetic conditions.  You can find out more by reading our new 5-year strategy for 2024-29.

I’m proud to have led Genetic Alliance UK through a challenging couple of years for the charity. I’m confident that the work I’ve done hand-in-hand with members, trustees and staff has resulted in a robust strategy that will enhance the charity’s reputation and strengthen its financial sustainability. I’m keen to hand on the baton to an inspiring leader to implement our new strategy and lead our talented and experienced staff on the next stage of this journey.

Louise Fish, current Chief Executive

Its been a pleasure to work with Louise over the past 2 years, and I would like to thank her for the commitment, professionalism and expertise that she has demonstrated throughout her time with us. Louise will continue to lead the charity over the coming months and support the recruitment of her successor as Chief Executive.

For the next stage of in charity’s journey we’re seeking to recruit a Chief Executive whose skills will complement the expertise of our senior team. We’re particularly keen to speak to candidates with business skills across income generation, business development, governance, strategic delivery, impact measurement, operational management, business planning and budgeting, financial planning and forecasting.

We will encourage all candidates for the role to demonstrate an understanding of their own skillset and articulate how they will bring in any additional skills that are needed.

Elizabeth Porterfield, Chair

Wanted: inspiring leader with strong people and business skills!

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). You can find out more about our work at

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.

For an informal conversation about the role, please contact current Chief Executive Louise Fish ([email protected]) and/or Chair Elizabeth Porterfield ([email protected]).

Deadline for applications: 17.00 on Monday 1 July 2024

You can find the application pack including a job description and details of how to apply at:

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


We will interview a maximum of 2 final candidates face-to-face in London on Wednesday 17 July 2024.