Our place in the CGD Community
Research is our middle name, but care and support are a big part of what we do, and are highly valued by users. We are sensitive to the fact that every case of CGD is a person, whose emotional wellbeing is ultimately more important than the state of their immune system.
We are particularly well known by the families in the UK who are dealing with CGD, and who we are able to meet face to face and talk with regularly on the telephone.
The close relationships we have with many of the affected families often starts at a very distressing point in their lives, when CGD has just been diagnosed. But having adjusted to their new perspective, many people with CGD and their families roll up their sleeves and get actively involved in the Charity. So you will find plenty of people with direct personal experience of CGD sitting on our board of trustees or working for the charity in other ways.
Our ‘Get Together’, allowing CGD families to talk to professionals and to meet each other, and twice-yearly newsletter have helped to keep people in touch and informed about the latest developments in research and treatment. The sense of solidarity among the CGD community grows year on year. Acting together, we have demanded greater attention is paid to the condition, and underscored our desire as a minority group to help much larger populations of people with genetic disorders, who also stand to benefit from research into CGD.
IMPORTANT NOTE :
The information contained on this website is intended only as a guideline, not as a substitute for medical advice. Always consult your doctor if you or your child has any CGD symptoms or concerns.
© 2001-2007 The Chronic Granulomatous Disorder (CGD) Research
Trust
Registered Charity No. 1003425 email:cgd@cgdrt.co.uk
The CGD Research Trust is a member of the Association of Medical Research Charities (AMRC), the Genetic Interest Group (GiG) and an associate member of the International Patient Organisation of Primary Immunodeficiencies (IPOPI)
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