WANTED: Trustees to support over 3.5 million people living with genetic, rare and undiagnosed conditions

We are an alliance of over 220 charities and support groups with an ambitious new 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. You can find out more about our work from our website at geneticalliance.org.uk.

We are looking for candidates with a personal or professional passion for driving these improvements, who can bring relevant expertise and diverse perspectives to shape our work.

We particularly welcome applications from people with lived experience of rare or genetic conditions either directly or through a close relationship/connection.  People from minority ethnic backgrounds and men are currently under-represented on the Board, and we would love to hear from applicants who can bring these perspectives to our work.

Treasurer

The Treasurer is a vital role. We seek an individual with an understanding of finance who can take the lead at board level in conjunction with our Finance and Governance Committee to:

• Liaise with finance staff and with the charity’s independent examiner or auditor
• Gain assurance that the charity keeps proper accounts
• Review the charity’s financial performance
• Ensure that the charity’s senior management has in place appropriate policies for finance and investment, along with robust and effective financial controls
• Oversee the charity’s financial risk-management process
• Report on financial matters to the members

Trustees

We are looking for up to three individuals who can bring expertise and diverse perspectives to shape our work.  We are particularly keen to recruit people with skills and knowledge in one or more of the following areas:

• Patient Involvement
• Fundraising and Income Generation
• Policy
• The NHS
• Genomics
• Life Sciences

All postholders will be appointed for a first term of three years, with a possible further three years. In exceptional circumstances this may extend up to a maximum of nine years.

What will you be doing?

The Treasurer and Trustees play a key role in leading and supporting the charity. We ask them to:

• Attend four Board meetings each year (at least three meetings are online, with one in-person Board meeting each year)
• Attend one in-person Board Strategy Away Day each year
• 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

You can find out more about the role of a trustee from the Charity Commission here. 

The roles are voluntary (unpaid), but we reimburse reasonable expenses necessary for attending meetings and taking part in Genetic Alliance UK business. 

Most of our trustees are appointed by 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.

How to apply

You can apply for either role by sending a CV and a short covering statement (maximum 300 words) to [email protected]

If you would like an informal conversation with the Chair in advance of applying, please email [email protected]

TREASURER: apply by 12:00 noon on Friday 1 November 2024

Interviews will take place via Zoom on the morning of Monday 11 November 2024.

The successful candidate will be co-opted to the Board from January 2025 prior to election at the AGM in September 2025.

TRUSTEES: apply by 12:00 noon on Friday 20 December 2024

Interviews will take place via Zoom on a date to be arranged in January/February 2025.  

Successful candidates will be co-opted to the Board from April 2025 prior to election at the AGM in September 2025.

Genetic Alliance UK is a Disability Confident Committed employer.