Trustee

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.