Job Description

The opportunity

The CGD Society is seeking a number of new trustees to assist in improving the services we deliver to our members, manage our assets and raise funds. Chronic Granulomatous Disorder (CGD) is a life-threatening genetic blood disorder which affects 1 in 250,000 people and presents as recurrent bacterial infections which can be life threatening. The CGD Society supports affected children, adults, parents and members of the extended family in the UK and our website provides the leading, world-wide resource of information about CGD.

The charity, originally established in 1991 as the CGD Research Trust, owns the trademarks for Jeans for Genes® and for Genetic Disorders UK®, an umbrella charity representing all genetic disorders which manages the annual Jeans for Genes Day campaign.

The Chronic Granulomatous Disorder Society is a charitable company limited by guarantee (registered charity number 1143049 and registered company number 07607593).

The role

We are seeking a number of trustees with a collective range of business and personal skills to build on the existing board with a view to the future. Our current board includes trustees who have at least one family member affected by CGD but we recognise we have gaps in our skills that need to be filled by people who may not have a direct connection to the disorder. We need people who are able to develop new ideas and help carry them through.

The role is primarily one of governance but involvement with particular areas of the charity will be encouraged and trustees may be nominated to be a member of one or more sub-committees to make use of their particular skills.

Required skills

Experience in any the following areas would be of interest:
Business Development, Strategic Planning, Law, Finance, Marketing/PR & Communications, Social Media, IT, HR, Fund Raising, Medicine or the NHS. Any experience of a rare medical condition would be a bonus.

Person description

We are looking for energetic, enthusiastic people who can be part of the team, contribute to the conversation and not be afraid to question what we do or how we do it. We are a small charity with a long history and we punch above our weight with assets that need to be maximised for the benefit of our members. For individuals who are able to rise to the challenge, there will be opportunities to lead improvement initiatives to develop the charity further.

What impact the opportunity will have

This is an opportunity to improve the lives of families who often live in fear of the next infection which will mean pain, stress, possible hospitalisation and may be life threatening. We are at the cutting edge of medical advancement including genetic engineering and stem cell transplantation and we have built the most comprehensive, world-wide resource for information about CGD. You can help us continue to advance our goals of improving the management of the condition and finding a permanent cure.

What’s in it for the volunteer?

There are always challenges ahead and decisions to be made. The task is to continue to deliver member services within financial restraints, to strengthen our brands and to plan for the future. Your input and the decisions made by the board as a whole could affect many people in the UK and across the world. Are you up to the challenge?

Time commitment

Board meetings are normally held on Saturdays, usually in central London, 4 or 5 times a year and last 5 to 6 hours. There may be other ad hoc meetings, email correspondence and occasional tele-conferences in the evening. The role is unpaid but out of pocket expenses are reimbursed.

We are very flexible with the location and where you are based but as long as you can commit to attending the above meetings.