We know that having CGD, or having it in the family, can be an isolating experience for some people: you are in a small minority, geographically scattered, the effects are very different on different individuals, general awareness is still too low, 'normal' life can be severely disrupted, it is exhausting. It can feel like nobody understands what living with CGD is like.
Families don't always want to talk about it or to constantly identify themselves or their children as having CGD. And despite all the courage out there, there is often a lot of uncertainty and worry to deal with - even if it is just Mum and Dad 'making a fuss'. There can be an urge to turn inwards and reaching out to the rest of the Community does take up some energy.
The CGD Research Trust aims to provide support and services for all people affected in the UK, and CGD families have played a big part in its success.
If you are not in the UK, our website means we can offer you information wherever you are in the world.
Have you got a specific question and can't find an answer? Please contact us and we will try to help.
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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