CHRONIC GRANULOMATOUS
DISORDER RESEARCH TRUST/SUPPORT GROUPChronic Granulomatous Disorder is one of several primary immunodeficiencies
which affect several thousand people in the UK. It was first described in the
late 1950s, and currently affects over 50 patients and their families in the
UK. The basic problem lies in a specialised white blood cell which because of
inherited genetic mutation are unable to form a crucial front line of defence
against common infections encountered in everday life. Thanks to advances made
in diagnosis and treatment, most people with CGD can now expect to live a full
life. The CGD Research Trust was formed in 1990 by Paul and Rene Numan, whose son
has CGD. The charity works to: - Raise funds for research to find a curative treatment for Chronic
Granulomatous Disorder.
- Promote awareness about the condition.
- Support its members through shared knowledge and experience of this rare
disorder.
The Trust is in regular contact with members through a newsletter, an annual
meeting and ad hoc enquiries. It aims to become a focal point for information
about the condition and its management for patients and for the medical
profession. 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.
Most Support Group members live in the UK - 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.
Chronic Granulomatous Disorder Research Trust/Support Group
The CGD Office
Manor Farm
Wimborne St Giles
Dorset
BH21 5NL  01725 517977
 01725 517977
 rosemarie.cgdrt@dial.pipex.com
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