about 1 month ago
Genetic Disorders UK (GDUK) is a registered charity founded in 2011 with a vision to improve the lives of individuals and families affected by genetic disorders.
There are currently more than 6,000 diagnosed genetic disorders affecting 1 in 25 children in the UK – this means 30,000 babies and children are newly diagnosed each year and more than half a million children and adults are living with a genetic disorder.
Our mission is to be the leading source of information and support for both those affected by a genetic disorder. We founded the UK Genetic Disorders Partnership Network to collaborate with charities and patient groups, special schools, hospitals, hospices and service organisations who support and care for those affected by a genetic disorder, with membership now numbering nearly 90 organisations. We have also organised the UK Genetic Disorders Leadership Symposium – a two-day event in central London bringing together charities and patient groups to learn about the latest research, best practice and support information in the field of genetic disorders. See www.geneticdisordersuk.org for further information.
Primary Immunodeficiency UK (PID UK) is also part of the GDUK family – set-up in 2013 in response to demand for an organisation supporting individuals and families affected by a primary immunodeficiency in the UK. Our aims are to help ensure that those affected by a primary immunodeficiency have the knowledge needed to manage their condition effectively and to ensure that their health needs are understood and addressed by those involved in policy and delivery of healthcare.
Our main fundraising event is the annual Jeans for Genes (J4G) Day campaign (see www.jeansforgenesday.org). A small team of passionate and dedicated professionals work hard every year to raise as much money as possible to fund much needed support services and increase the number of grants we provide to disorder-specific charities.
GDUK has an enthusiastic team of six permanent staff supported by committed third parties and volunteers who come together to deliver J4G and the wider purpose of GDUK and PIDUK. The GDUK Board comprises six trustees who are all passionate about the role GDUK plays in the genetic disorders community and the potential for the future.
The GDUK Board is seeking a new trustee. We aim to have a broad range of experience on the Board, including people directly or indirectly affected by a genetic condition as well as those with professional experience relevant to the aims and activities of the charity. As a trustee, you would help to set strategic direction and governance for our charity, support the GDUK team and guide all aspects of our work.
We are particularly keen to attract people with experience in Accounting (ideally at Finance Director or equivalent level) who will provide oversight for all financial matters on behalf of the Board.
The role could be either a full trustee role or an adviser to the Board.
As a trustee, you will also contribute actively to the Board in its role to:
Give strategic direction to the organisation and ensure GDUK always works with the stated objectives of the charity in mind
In partnership with the CEO and trustees, ensure financial stability and the effective and efficient operation of GDUK and ensure fundraising is maximised in parallel to costs being managed in order that cost:income ratios and charity reserves are maintained at healthy levels
Ensure governance is of the highest standard and leading practice is followed, especially to ensure the financial affairs of the organisation are conducted within legal requirements, accounting conventions and good practice
Safeguard the good name and values of GDUK and the Jeans for Genes brand
Make good use of the skills, knowledge and experience of the Board
Support the GDUK CEO and team to carry out their responsibilities effectively and efficiently, approving annual budgets and spending proposals as necessary
Ensure GDUK is a responsible and supportive employer
The role is a volunteer role, although expenses for travel may be claimed.
It is important that anyone considering this opportunity is able to commit the time necessary to undertake the role.
During a normal year, Trustees are expected to prepare for and attend four to five board meetings and the annual symposium, as well as participating as needed in the life of the organisation in between. Meetings are typically held in central London late afternoon/early evening on weekdays and occasionally on Saturdays.
For the next 12-18 months whilst the Board and CEO are undertaking a strategic review, time will also be required between meetings to review day-to-day financial management, have oversight on costs and income and to assess the financial implications of strategic options under consideration.
What’s in it for the volunteer?
The Charity is currently at a crucial time in its development and will really benefit from engaged individuals helping steer its strategic future. Through your work, you will help improve the lives of individuals and families affected by genetic disorders. This is also an opportunity to learn from other Board members and develop skills working in a multi-disciplined team. Board meetings will allow individuals to exercise challenge and influence the charity and its projects’ direction, which could be particularly useful to individuals interested in executive and non-executive directorships on company and government Boards in the future.
To register your interest, get further information or to talk to one of our existing trustees, contact Jill Lucas or Harriet Hanna at email@example.com.