CDG – UK is a charity set up by the parents of affected families in order to provide support networks in the UK.
Our first objective is to raise awareness of this extremely rare disease and to reach out to other families who are affected by it. As more health professionals have become aware of CDG, more children and adults are being diagnosed in the UK, and as we know that a rare diagnosis can be isolating, and we wish to extend a hand of friendship to others facing the same.
We work closely with our patron, Dr Stephanie Grunewald of Great Ormond Street Hospital, to distribute our information, and to keep updated on the latest developments in the world of CDG. We provide information via our website and by newsletters, and we meet at least once a year for an informal and friendly get together.
Our second objective is to raise funds for research into this group of currently untreatable diseases. According to Professor Jaak Jaeken, the first professional to identify CDG, ‘the rewards are many but the workers are few’. In other words, there is so much to be learnt about CDG and so much more that can be done in terms of diagosis and possible therapies, but there are very few researchers and doctors working in this area at the moment. With funding, we wish to change this, by collaborating with researchers and health professionals with one end goal: a cure for CDG.
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Thank you for your support!
Click here to see what upcoming events you can get involved with!Dr. Seuss