The Chronic Granulomatous Disorder Society (CGDS) is the leading charity in the world dedicated to promoting an understanding of CGD and providing support to affected individuals and their families. The charity was originally registered in the UK in 1991 under the name of the Chronic Granulomatous Disorder Research Trust (CGDRT). It was incorporated and renamed the Chronic Granulomatous Disorder Society in 2011.
Chronic granulomatous disorder (CGD) is a rare, life-threatening, inherited condition affecting the immune system. CGD affects around 6 in a million population and is caused by a faulty bone marrow gene that renders white blood cells unable to produce an enzyme needed to fight off infections caused by certain types of bacteria and fungi. As a result, those affected by CGD are susceptible to serious and debilitating illnesses, life-threatening complications such as colitis, abscesses on the skin and organs, and severe respiratory problems.
We represent some 2000 members in 60 countries, of which half are affected individuals and the remainder are supporters and medical professionals. Of those affected, members in the UK and USA account for about two thirds, with Australia, Canada and India making up the top five. There are five variants of CGD, of which X-linked is the most prevalent.
Exciting developments in the last twenty years have delivered a curative option for some patients through haematopoietic stem cell (bone marrow) transplant. Gene therapy, our five-year goal trumpeted in 1991, is finally undergoing clinical trials for two CGD variants. It offers a potential second curative option for patients but is still several years away from the clinic. CGDS has invested more than £2m in gene therapy research and this has led to commercial interest and investment in refining the protocols that our funding has helped to develop. We can, therefore, claim that we have laid a solid foundation for driving forward this new branch of medicine.
Nevertheless, CGD is an under-diagnosed, rare condition for which there is no universal and risk-free curative option. Depending on the medical history and the genetics of the individual, most of our members, especially older members, are living with this rare condition and are suffering in challenging medical and social conditions. Also, we now understand that X-linked carrier mothers can often face significant health challenges, the same as those seen in patients directly affected by CGD. They represent another significant cohort in need of our support.
Hence, as the world of genetics and associated therapeutic options develops rapidly, we have a three-year strategy launched in 2020 to help us identify our targets and goals in support of our membership.
The main strategic priorities are as follows:
Support:
We will continue to provide support to patients and families affected by CGD by keeping abreast of new research and treatments. We will build on our extensive experience by promoting awareness of CGD and providing individuals, families and medical professionals with easy access to comprehensive information and advice. We will also explore ways in which we can offer additional support for mental health and associated quality of life issues associated with living with CGD.
Partnerships:
We will provide strong leadership in facilitating closer working between government healthcare agencies, hospitals, clinicians and specialists in order to benefit those affected by CGD. We will build relationships with like-minded charities with similar goals to our own, and pharmaceutical companies and healthcare providers, where this is in the interest of our members and is within our strategic aims.
Sustainability:
We will work towards achieving a robust and resilient future for the Society by:
Vision statement: A cure for all with CGD
Mission statement: To continue to inform and improve our support to the whole of the CGD community
CGDS operates a telephone and email helpline to provide advice to members. We also pay for a Clinical Specialist Nurse who works out of a London hospital and offers hands-on support in clinics, for in-patients, as well as advice at home, in school and in the workplace.
Arguably, the charity has the most comprehensive website dedicated to CGD anywhere in the world. We maintain a watch over CGD developments and hear feedback from members and clinicians as we learn from the latest treatments. We have a Medical Panel of CGD specialist clinicians who will ensure that our advice is current and appropriate.
We have a small staff who maintain these services as well as encourage membership fundraising through social media channels and events. Our senior employee is based in Dartford but the charity has national and international reach. Most physical meetings will be held in London but these are a rarity at the moment.
We have a Trustee Board of six, the majority of whom are family members affected by CGD. They are responsible for setting the strategic aims and monitoring the work of the executive team to achieve them. All trustee meetings are currently virtual but we hope to have at least one physical strategy meeting per year if Covid restrictions allow.
In the 1990s, we launched a one-day fundraising campaign to encourage pupils and employees to wear their jeans to school and work in exchange for a small donation. We called it Jeans for Genes Day which is still an annual event 25 years later. The CGD Society owns the trade mark and benefits from a licence fee which funds part of our work. Since 2021 this event is run by our independent subsidiary charity, Jeans For Genes Campaign.
