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  Sharing experiences of CGD brings those affected by CGD together, helping us better understand the reality of living with CGD, sharing the highs and lows, and acting as an important reminder that we are not alone in our CGD journey. Would you like to get involved and share your experience with CGD? If you do,…

FAQs – Lung Issues Here we try to answer some of the common questions people have about their lungs and how to take care of them. How many breaths a day do we take? On average, about 17,280 How much air do we breathe? People with healthy lungs breathe in around 11,000 litres of air…

Leave a Gift in Your Will A legacy gift to the CGD Society in your will could make all the difference. When people decide to leave a gift in their will (sometimes called a legacy) to a charity they’ve supported throughout their lifetime, they can continue to help a cause that’s close to their hearts.…

Gene Therapy Grants The main objective of the CGD Society and its predecessor, the CGD Research Trust, has been to help develop a cure for CGD using gene therapy. We have invested over £2.13 million in pursuit of this goal. Funding, which started in 1998 with proof of concept studies, has resulted in 40 publications.…

FAQs – Key Questions when Considering BMT Establishing at which centre you or your child will have a bone marrow transplant (BMT; also known as ‘hematopoietic stem cell transplant’ or HSCT) is a major decision. To help you research which centres have the necessary experience in BMT for CGD, we have put together a list…

Jeans for Genes What is Jeans for Genes? The Jeans for Genes campaign has a mission to change the lives of everyone across the UK living with a genetic condition. It raises awareness of the daily challenges faced by those living with a genetic condition and raises money to fund projects like ours that make…

For Medical Professionals This area of the website is written for medical professionals. If you are an affected family or individual, you may prefer to read the information provided in other parts of this website. We are looking for inspiring individuals to join our Board of Trustees – apply now

Understanding the Process The process of carrying out a BMT is complex but well understood. We want to give you as much information about how the process works and other peoples’ experiences. Please take some time to understand what may be involved. BMT Guide for Families LEARN MORE Listen to the Experts LEARN MORE BMT…

Joe’s Story (February 2011) Joe’s BMT had his BMT on the 1st February 2011. He had an unrelated matched donor and has 100% engraftment and is completely cured of X-linked CGD. He was in hospital for 40 days and after recovering at home he is now back in school. Joe wants to be a doctor!…

Tom’s Story (April 2011) In 2011, Tom, then 17, became the first person with CGD to have a BMT at University College Hospital, London (UCLH) when he received marrow from an unrelated matched donor. He now has 100% engraftment, when blood stem cells started producing healthy blood cells, and no longer has autosomal recessive CGD.…