WANTED: Trustees to support over 3.5 million people living with genetic, rare and undiagnosed conditions.
Genetic Alliance UK is looking for three new trustees as well as a new chair due to existing board members having served the maximum time allowed.
About us
We are an alliance of over 220 charities and support groups with an ambitious strategy focused on working together to improve the lives of the 1 in 17 people in the UK affected by rare, genetic or undiagnosed conditions. We campaign for timely diagnosis, better coordinated care, and improvements in screening, testing, services and treatment.
What are we looking for?
We are seeking candidates with a personal or professional passion for driving these improvements, who can bring relevant skills and experience to help shape our work. As part of the organisation’s work to foster diversity, equity and inclusion, we aim to have a broad and varied membership of the Board. We encourage applications from the devolved nations of the UK. We particularly welcome applications from people with lived experience of rare, genetic or undiagnosed conditions either directly, via family and friends, or through a connection with one of our member organisations.
We are keen to recruit people with skills and knowledge in one or more of the following areas:
● Business development and income generation
● Human resources and people management
● Fundraising and philanthropy
● Media, communications and public relations
● Reproductive choice techniques and ethics
● Research in genetics or rare conditions.
What will you be doing?
Trustees play a key role in leading and supporting the charity. We ask them to:
● Attend four Board meetings each year (at least two meetings are held online, with one or two in-person Board meetings each year usually in central London)
● Attend one in-person Board Strategy Away Day each year (usually following one of the in-person Board meetings)
● Attend the one-hour Annual General Meeting in autumn each year
● Consider joining one of our sub-committees, with up to four online meetings each year.
The roles are voluntary (unpaid). We reimburse reasonable expenses necessary for attending meetings and taking part in Genetic Alliance UK activities.
Most of our trustees are sponsored by our member organisations. If you have a connection with one of the charities in our alliance or the conditions they support, please mention this on your application.
We will provide full induction for successful candidates.
All postholders will be appointed for a first term of up to three years, with a possible further three years and up to a maximum nine years in exceptional circumstances.
Registered Charity 
11 - 20
The client requests no contact from agencies or media sales.
Thank you!
About CSE
The Centre for Sustainable Energy (CSE) supports people and organisations across the UK to tackle the climate emergency and end the suffering caused by cold homes. We undertake practical work to support households and communities to act on energy, alongside original research and analysis to inform local and national policy.
We are one of the UK’s leading sustainable energy charities, with a 45-year track record of award-winning impact, innovation and influence, as most recently detailed in our 2024–25 Impact Report available on our website.
About the role
Our Board of Trustees is critical to our continuing success. Trustees work collaboratively, providing support, insight and constructive challenge to help shape CSE’s strategy and ambition, and enhance our effectiveness and charitable impact.
Due to the planned stepping down of some of our board members, we are recruiting up to four new trustees to join the board and provide effective governance and support in the next phase of CSE’s development.
Who we’re looking for
All applicants should be able to demonstrate a strong interest in and commitment to CSE’s work and charitable objectives.
We are particularly seeking new trustees who bring expertise in at least one of the following areas:
- Knowledge and understanding of the community energy sector, including the challenges and opportunities of delivering local or community energy projects, and how these connect to national policy
- Expertise in organisational development, with a good appreciation of issues associated with employment law
- Experience of finance, accounting and audit, for example through holding a role with financial responsibility in an organisation or from having set up, grown or led a business
- Strong knowledge of voluntary and community sector (VCS) networks, including practical experience of community organising and an understanding of the role grassroots organisations play in affecting social change
We would also welcome applicants who bring:
- Broader expertise directly associated with at least one of CSE’s work programmes (fuel poverty advice and support, housing energy retrofit, community action on energy, local net zero delivery, future generations, or fairness in the energy system)
- Understanding of the causes and impacts of fuel poverty, and the solutions required to tackle it
- Knowledge of the UK energy system, including the policy and regulatory environment, and the transition to a fairer, more flexible, decarbonised energy system
- An understanding of the national policy environment underpinning CSE’s work, including experience of influencing national energy policy
We are keen to widen the range of perspectives represented on the board and welcome applications from young people, people from under-represented groups, disabled people, and people with lived experience of CSE’s work.
If you are interested but unsure whether you meet all of the criteria, we would encourage you to apply or get in touch for an informal conversation.
Find out more and apply
For more information on the role, including the full person specification and how to apply, please see the trustee candidate pack on our website.
Closing date: Midday on Wednesday 10 June 2026.
The client requests no contact from agencies or media sales.