Would you like your photo to be hanging in a swanky London office?

Orchard Therapeutics are keen to get to know the CGD community better; they want their employees and investors to appreciate the challenges faced by those affected by the condition. They have contacted us to request photographs of our members, which they would like to display in their offices and reproduce in their publications. We would also like to use the photographs on our website and in our publications.

We’d like to support the company’s initiative and are requesting members to get in touch if they would like to take part.

We are looking for one family/adult who have not received a BMT and who are affected by X-linked CGD and one family/adult affected by p47 autosomal recessive CGD, who live in the home counties or London and are willing to be photographed by a professional photographer at their home or in the surrounding area. The photographer will aim to capture life with CGD through headshots and lifestyle pictures. Helen Braggins, our CGD Clinical Specialist Nurse, will accompany the photographer on all visits.

Any participating member must sign a consent form for Orchard Therapeutics and the CGD Society to agree to the use of the photographs, which will remain the property of Orchard Therapeutics. Members’ contact information will not be given to or held by Orchard Therapeutics and all communication will be from us or the photo agency.

As a thank you, families will receive a £50 voucher per CGD patient to spend at a store of their choice and a canvas print of their favourite photo.

If you would like to take part, then please contact me, without obligation, at claire.jeffries@cgdsociety.org. If we receive lots of interest, Helen will decide which families to engage in this work.

A similar project has already been completed by another rare disease charity. The photographs are excellent quality and a great testament to the charity’s membership. I know that the CGD Society could achieve the same.