Chronic Granulomatous Disorder Research Trust / Support Group

The CGD Office
Manor Farm
Wimborne St Giles
Dorset
BH21 5NL

Tel: 01725 517977
Fax: 01725 517977
Web: www.cgd.org.uk
Best time to telephone: any reasonable time (answerphone operates).

CGD is a very rare, genetic blood disorder. This primary immunodeficiency was first described in the 1950's. The charity is in contact with over 100 patients and their families in the UK and is in touch with more families world-wide. The basic problem lies in a specialised white blood cell; as a result of genetic defect these are unable to form a crucial front line of defence against certain bacterial and fungal infections. Thanks to advances made in diagnosis and treatment, people with CGD can now expect to lead a full life.

The charity:

• Raises funds for research to find a curative treatment for Chronic Granulomatous Disorder. 2005 sees the start of UK clinical trials with gene therapy for people affected by CGD.
• Supports its members through shared knowledge and experience of this rare disorder.
• Funds the employment of a specialist nurse.
• Has funded the compilation of a UK CGD Registry, and also an extension to the European Registry.
• Promote awareness about the condition.
• Disseminates knowledge amongst medical professionals

The Trust is in regular contact with members through a newsletter, an annual meeting and ad hoc enquiries. It is a focal point for information about the condition and its management for patients and for the medical profession. There is no membership fee. The charity hopes to foster contact with equivalent overseas groups as it believes that shared information will help all those concerned with treatment and research. The charity is the founding partner of the annual Jeans for Genes Campaign. As it is so rare the majority of GPs have never encountered CGD, and only a small number of consultants have treated people with this condition.

 
Checked: June 2006

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