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Bereavement Support Nothing can prepare you for what you are experiencing if you have lost a loved one to CGD. Grief can last for years, not weeks or months. Its duration is different for everybody – because everyone is different. Many people may benefit from reaching out to specialist bereavement support organisations to help them…

UK Based Nursing Services Paediatric nursing services Please note that our CGD Clinical Nurse Specialist is currently on annual leave returning on the 30th September 2024. If you need to make contact please use the contact details for ‘Outside of these dates and hours and in emergency’ As part of our support services CGD Society…

Constantino’s Story (July 2017) Hi, I am an ex-Great Ormond Street Hospital (GOSH) patient having been a patient there for about 17-18 years, until I was transferred to the Royal Free Hospital where I now just have yearly checkups to make sure I am doing well. My brother Nicholas also had the same condition as…

Tom’s Story (November 2017) This is the story of Tom, who died on 9 July 2014 from infections after a BMT. His story is told by his mum, Michaela. Tom had all the classic symptoms of CGD when he was a baby and was misdiagnosed with Crohn’s disease. He was finally diagnosed with CGD, p47…

Olivia’s Story My name is Olivia Leigh and I am a carrier of XL-CGD. I was diagnosed as a carrier when I was three; my brother had CGD and my sister was not a carrier. My brother tragically died in 2009 after two failed bone marrow transplants. I am married with two children, one girl…