Seeking New Trustees and Chair of Trustees

About Us

Genetic Disorders UK (GDUK) is a registered charity 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, and the charities and patient groups that support them.  See www.geneticdisordersuk.org for further information.

Our main fundraising event is the annual Jeans for Genes 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.

For the last four years, 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.

The Opportunity

The GDUK Board is seeking new trustees, including one to act as Chair of the Board.  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)
  • Advertising and marketing via online campaigns/social media
  • Fundraising
  • Human Resource Management

As a trustee, you will 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
  • Ensure the financial stability and the effective and efficient operation of GDUK
  • Ensure governance is of the highest standard and leading practice is followed
  • 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 her 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 Chair will ideally have prior experience as a trustee or other relevant Board role.

Remuneration

The role of Trustee is a volunteer role, although expenses for travel may be claimed

Time Commitment

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.

Additionally, the Chair will have regular updates with the CEO, typically once every two weeks by phone and occasionally meetings in person in central London.

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.

Interested?

To register your interest, get further information or to talk to one of our existing trustees, contact Eric Pillinger, Jill Lucas, Alina Lapuerta or Harriet Hanna at chair@geneticdisordersuk.org.