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About CGD Living with CGD For Medical Professionals Latest News OUR SERVICES The CGD Society can support you in several ways.     READ MORE SUPPORT US There are many ways you can support us and make a difference to the CGD community.     READ MORE Become a trustee Make a difference and join…

COVID-19 : Taking care of your mental & emotional well-being We know that living with and managing CGD or being an X-linked carrier can have an impact on your wellbeing and mental health. Many people will need emotional support or professional psychological counselling at some stage. This is especially true in regard to the current…

Virtual fundraising events COVID has hit the charitable world pretty hard this year.  Studies from the Institute of Fundraising show that 92% of all charities reported a fall in income during lockdown and 91% of all charities have had to cancel events. On a small charity scale like ours, only one in five small charities…

Claiming Diasability Living Allowance for Your Child About DLA You might not consider your child ‘disabled’ but if they have a long-term illness such as CGD they may be eligible. Also don’t feel stigmatised by claiming Disability Living Allowance (DLA), if your child qualifies you are entitled to it. DLA covers children up to the…

FAQs – Transition from Children to Adult Services Moving from children to adult care services is called “transition” Here are some frequently asked questions concerning transition from paediatric care to adult services. When do I have to move from seeing a paediatrician to adult care? This usually happens when you’re between 16 and 18 years…

Noah’s Story (January 2012) Noah, 7, had X-linked CGD and a BMT via an unrelated donor from the US on 27 January 2012 at Great Ormond Street Hospital. He spent 62 days in hospital and now has 100% engraftment, meaning all the donor’s stem cells have settled in his bone marrow and are producing healthy…

Isaac’s Story (February 2014) Isaac’s mother, Micheala, had known she was a carrier of chronic granulomatous disorder (CGD) and that any son she had would have a 50/50 chance of inheriting it from her. Isaac tested positive at just one day old and started antibiotic treatment three days after his birth. At seven months old,…

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…

Claiming Personal Independence Payment (PIP) About PIP Personal Independence Payment (PIP) is a benefit available in the UK for people aged 16–64. It can help with some of the extra costs caused by long-term ill health or a disability. If you are older than 64, you need to claim Attendance Allowance. PIP has replaced the…