Bromsgrove
https://www.cdg-uk.org/CDG UK is the national charity supporting patients and families affected by Congenital Disorders of Glycosylation. We raise awareness and funds for research into this incurable group of disorders.
Health
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, we wish to extend a hand of friendship to others facing the same. We provide information via our website and by newsletters, and we meet at least once a year for an informal and friendly get together. 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.
CDG UK is looking for help to produce a pack of 4 leaflets for families with a member newly diagnosed with CDG. The content of the 4 leaflets has been produced with the help of Costello Medical, and we are now looking for help with design. Thanks so much! Julia
Posted on Jun 11, 2018