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2025-03-31-accounts

Company no 07607593 Registered charity no 1143049

CGD SOCIETY

ANNUAL REPORT & FINANCIAL STATEMENTS 2024-2025

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Introduction from our Chair

It is with great pride and gratitude that I welcome you to the CGD Society’s annual report for 2024/25.

This year has been one of both challenge and progress. Against a backdrop of continued global uncertainty and increasing pressures on healthcare systems, our community has once again demonstrated remarkable resilience, compassion, and determination. The CGD Society has remained steadfast in its mission to support individuals and families affected by chronic granulomatous disorder (CGD), while also supporting research, awareness, and advocacy.

Our membership has grown, and our engagement with both the clinical and research communities has deepened. This year, we have also strengthened our partnerships with international stakeholders, reinforcing our role as a global voice for those affected by CGD.

One of our proudest achievements has been the continued support to offer access to nursing provision through our partnership with Great Ormond Street Hospital (GOSH). This service has continued to provide vital access to specialist knowledge and ongoing support across the healthcare sector for those affected and living with CGD. We have supported new initiatives aimed at improving treatment pathways and access to care, while also investing in the next generation of scientific inquiry. These efforts are vital to our long-term vision of a world where CGD is better understood, better treated, and ultimately, better lived with.

The Jeans for Genes campaign has grown in strength, providing the ongoing basis for our support across the rare disease’s community enabling projects and other critical work to be undertaken through the Jeans for Genes grants programme. This has provided the platform for strengthening our partnerships with other communities and charities to further our collective cause.

Of course, none of this would be possible without the unwavering support of our members, donors, volunteers, and partners. Your belief in our mission fuels everything we do. I would also like to extend my heartfelt thanks to our dedicated staff and trustees, whose commitment and expertise have guided the charity through another transformative year.

As we look ahead, we do so with cautious optimism. The road is not without its obstacles, but with your continued support, we are confident in our ability to meet the challenges ahead and to seize the opportunities that will shape a brighter future for all those affected by CGD.

Thank you for standing with us.

Wayne Kitchener Chair of the Board

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Contents

Introduction from our Chair 2

Our charity 4 Our mission & purpose 5, 6, 7 Alfie’s story 8 Delivering for the community 9, 10 This year’s support highlights 11 Other moments this year 12, 13 Fundraising and partnerships 14, 15 Fundraising stories 16 , 17 Our plans for the future 18, 19, 20 Administrative information 21, 22 Financial review 23, 24, 25, 26 Statement of Trustees responsibilities 27 Independent examiner’s report 28 Statement of Financial Activities 29 Balance Sheet 30 Notes to the Financial Statements 31, 32, 33, 34, 35, 36, 37, 38, 39 References 40 Thank you! 41

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Our charity

About Chronic Granulomatous Disorder (CGD)

CGD is a rare, potentially life-limiting, inherited condition of the immune system. It affects around eight in a million people 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, such as colitis, abscesses, and respiratory problems.

In recent years improved treatment protocols and a stem cell transplant option have improved the prospects for some patients, but nonetheless this disease remains hard to live with and can be life-limiting. In common with many rare diseases, CGD patients endure a poorer quality of life, persistent anxiety about their condition and sadly, for some, a shorter life expectancy.

There are five main types of CGD. Most cases affect boys through a single gene error in the X chromosome inherited from a carrier mother. The remaining, and much rarer four variants are ‘autosomal recessive’ and involved inheritance of a faulty gene from both mother and father and can affect boys and girls.

X-linked carrier mothers can be significantly affected by their genetic condition. Apart from the psychological impact, they can suffer a variety of mainly auto-immune problems that can damage their quality of life. Hence, carrier mothers have become a further important subgroup of patients affected by CGD.

Treatment of CGD

People with CGD need to take medication all the time to prevent infections. Even then, they can develop serious problems, which lead to life-threatening illnesses and long spells in hospital. As well as medication, doctors have been having increasing success in treating CGD with bone marrow transplants. Marrow has come from both relatives and unrelated donors. However, there is no one treatment or cure for all people with CGD. And a bone marrow transplant isn’t possible for everyone.

Exciting gene replacement therapy trials are underway at the moment, and there’s hope this may find a cure. However, more work is needed before it can become a regular treatment option. Gene therapy is a relatively new branch of medicine. Research is ongoing to improve the outcomes of gene therapy for CGD with the intention that it offers an alternative for permanent cure.

To learn more about the types of CGD, how they are inherited and about managing the disorder, please visit our website www.cgdsociety.org.

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Our mission & purpose

The Chronic Granulomatous Disorder Society (CGD Society) is a leading charity 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 the Chronic Granulomatous Disorder Research Trust (CGDRT). It was incorporated and renamed the CGD Society in 2011.

This charity represents some 1,973 members of which 35% are affected individuals or family members; the remainder are supporters and medical professionals. Of those members, around 831 are in the UK and 494 in the USA. The membership is spread across 81 countries of which the UK, USA, Australia, Canada, India, Ireland, France, Spain, South Africa, and China make up the top ten. Our membership increased with 205 new members joining in the financial year 2024–2025.

Our objectives and activities

Our primary purpose is to support the patients and families of those suffering from chronic granulomatous disorder. Our methods and aims have changed over the 34 years since the charity was founded, and our current charitable objects as laid down in 2011 are:

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Our mission & purpose

How we achieve this

At the CGD Society, our work is dedicated to improving the lives of individuals affected by chronic granulomatous disorder (CGD), other primary immune deficiencies, and related conditions. We pursue this mission by delivering direct support to patients and families, advancing research, raising awareness, and advocating on behalf of the CGD community.

Our core activities reflect our commitment to the following charitable objectives:

1. The relief of persons suffering from CGD or other primary immune deficiencies or related illnesses:

We are committed to providing comprehensive support for individuals and families affected by CGD. One of our most impactful initiatives is the full funding of a dedicated CGD Clinical Nurse Specialis t based at Great Ormond Street Hospital. This specialist serves as a vital resource, offering direct contact and expert care for patients and families dealing with CGD-related health concerns.

Their role includes supporting hospitalised children and adults, acting as a liaison for local hospitals and GPs - particularly in emergencies - and attending clinic appointments to ensure continuity of care. They also carry out home visits to administer medication and assist with social care needs, liaise directly with schools and employers to help them understand CGD and the individual needs of affected individuals, and coordinate genetic testing for patients and their families. Importantly, they also provide tailored care and support for female X-linked CGD carriers.

Our confidential email and telephone helpline is available to the CGD community worldwide and is monitored by our dedicated staff, offering guidance, information, and emotional support.

We offer a Family Support Fund , which provides financial assistance for essential needs such as prepayment prescription certificates, hospital travel and parking costs, equipment to help children continue their education during hospital stays, and support for families during extended hospital admissions (such as bone marrow transplants).

We also fund special days out for families to create positive memories during challenging times.

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Our mission & purpose

2. The advancement of medical research into the causes, cure, prevention, or relief of such disorders and/or illnesses:

We collaborate with leading researchers and pharmaceutical companies working on innovative treatments, including gene therapy, to improve outcomes for those with CGD. Our Medical Advisory Board, composed of experts in the management of CGD, guides our approach and ensures that our activities are informed by the latest clinical knowledge. We actively participate in and support the dissemination of medical research through our partnerships and involvement in relevant medical conferences and forums.

3. To advance the education of the public on the subject of such disorders and/or illnesses:

We produce and distribute a range of high-quality medical information resources and booklets for both patients and medical professionals. Our comprehensive website serves as a hub of accessible, up-to-date information for anyone affected by CGD. We also run online events, family days, and weekend gatherings that offer educational content, peer support, and opportunities for the CGD community to connect. These initiatives help to reduce isolation and improve understanding of the condition across the public and healthcare sectors.

4. Such other purposes as are charitable according to the laws of England and Wales for the benefit of the public:

We advocate for the needs of the CGD community at national and international conferences and engage with stakeholders across the healthcare landscape to promote better access to care and treatment. We also signpost individuals to relevant external services, including mental health support, ensuring a holistic approach to care.

Through these combined efforts, we remain steadfast in our mission to support, inform, and empower those affected by CGD, while contributing to meaningful progress in treatment and awareness.

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Alfie’s CGD Story

My story with CGD starts from early on. I was born with a large red rash which signaled to the doctors that something was wrong. Soon after that happened, as far as I’m aware, my blood was tested for CGD. This then also meant that my brothers needed to be tested, and one of my two brothers also had CGD.

Growing up with CGD

I was sick a lot and didn’t get to go on many trips with school or go out with my friends. This made it hard to make friends and socialise, but to also keep up with the rest of the kids educationally. I wasn’t able perform too well on my sats tests at the end of primary school, and when I got into secondary school it only made it harder to do well.

I had to get motivated about things I wanted to change in my life to get to where I am today. So, in year 10 I became fully committed to changing my life. I started to do more revision and soon worked harder than anyone else in my school and my GCSE predicted grades changed from 3/4s across the board to 7/8s in a year. This then enabled me to get into sixth form to do A-levels.

Moving on to A-Levels

I would say A-levels is where I decided that science was the subject for me because I wanted to help people going through a BMT (bone marrow transplant). I am now aware what science can do for people, so again I worked hard and got into university to study Biochemistry. I had my BMT the day after my 9th birthday, I’m now 19 so 10 years have now passed. As a child, I remember it as a fun trip away from school, but then as it got into more of the isolation part of the treatment where the chemotherapy started, I got angry and wanted to go home. This isolation affected me. However, I wasn’t truly alone as I was with kids who were going through similar treatments and made friends with them. I just remember shouting at my poor mum and the nurses at the time when I was fed up with everything.

As a child you don’t really understand what’s going on or why the doctors and nurses do what they do, so having the Hickman line and the peg put in was a very odd experience for me.

You don’t expect to lift your shirt and see wires and tubes coming from outside of your body, but my mum reassured me it was ok, and the doctors and nurses were ever so lovely and explained it to me as well as you can to a child.

After the Bone Marrow Transplant

The aftermath of my BMT meant I could only go to school for short periods and the rest of the time I was at home, it was hard to fit back in at school as all kids around that age are very active. Due to the treatment, I couldn’t be active, so it was difficult. However, I’m still here to talk about the BMT so I’m extremely grateful for its success.

I did have a lot of mental health struggles, which stemmed from the BMT. I was isolated from all my friends, which made it hard for me to socialise and made my anxiety worse. However, I have had a lot of help with this and now make friends very easily.

I really do have to mention my mum in this story, though, as I respect and love her so much. She was with me for most of my hospital visits, took care of me when I was ill, and when I was having my BMT as I was in hospital for a long time. My Mum was with me every night and day.

I truly cannot put into words how much stuff my mum has done for me, and I probably wouldn’t be here if it wasn’t for her.

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Delivering for the community

Beyond our patient and family support programmes and our clinical nursing service, we run a series of events throughout the year to bring families together and spread awareness. As 2024/25 was a reset year for our charity, we are proud to be able to continue this activity, despite our limited resources. Below are some of our favourites from the last 12 months.

Online get togethers

Our CGD community greatly values our online gatherings. This year, we hosted two virtual events, offering the opportunity to connect with leading experts and interact with other CGD families. In June, we hosted a virtual gathering specifically for X-linked CGD carriers. Led by Dr Siobhan Burns, Professor of Translational Immunology at University College London, the event provided a platform for participants to share their experiences, learn about the latest advancements in treatment, and engage in an insightful discussion with Dr Burns. n February, we held a virtual gathering centred on Gene Therapies for CGD.

Attendees had the opportunity to hear from Professors Claire Booth and Emma Morris about the latest advancements in gene therapy and their potential impact on future treatment options. The session also included a chance for participants to ask questions and share their thoughts and concerns. Both events were attended by CGD families and individuals here in the UK and around the world and were a resounding success.

We extend our heartfelt thanks to Dr Siobhan Burns and Professors Claire Booth and Emma Morris for generously sharing their time and expertise to support these events.

Royal Society of Medicine

Our charity had the honour of sponsoring and attending the Royal Society of Medicine's Gene Therapy Conference on June 11th. Our CGD stand was proudly staffed by our Executive Director, Claire Liddle, and our CGD Clinical Nurse Specialist, Helen Braggins.

The conference featured insightful presentations by renowned keynote speakers, exploring topics such as the potential of cell and gene therapy and its applications in treating both acute and chronic conditions. While significant progress is still needed to develop a gene therapy treatment for CGD, we left the event feeling optimistic about the future of gene therapies.

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Delivering for the community

Gene therapy

We were delighted to partnership with Ensoma this year. Ensoma are developing a new genomic medicine based on engineering hematopoietic stem cells (HSC) in vivo to develop a durable source of therapeutic blood and/or immune cells that treat chronic disease. X-linked CGD is one of three lead programmes for this new technology. In December, our Executive Director met with members of the Ensoma team to explore their vital work and discuss opportunities for collaboration to ensure that the patient’s perspective is central to the process. Then in March, we hosted an online feedback session with Ensoma and our patient advisory group, comprised of individuals affected by CGD.

This group included an X-linked carrier, a parent of a child who underwent BMT, a young adult who participated in a gene therapy trial, and others living with CGD. During the session, the advisory group gained valuable insights into this promising treatment option and provided feedback on clinical trials and their potential impact on individuals and families.

The initiative was a resounding success, with committee members feeling valued and empowered, knowing their contributions made a meaningful impact. Ensoma gained invaluable feedback from the perspective of the CGD community, fostering a deeper understanding of patient needs and priorities. We would like to thank the members of our advisory board for providing their time and expertise.

Rare Disease Day at Westminster

To mark this year’s Rare Disease Day, Claire, our Executive Director, and Catherine, our Fundraising and Marketing Officer, attended a Rare Disease Day reception at Westminster. Organised by Genetic Alliance UK it was a great opportunity to meet with other genetic rare disease charities, raise awareness of CGD and hear from MPs about updates on the government’s Rare Disease Framework and the focus going forward.

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This year's support highlights

Helen supported 274

Our CGD Clinical Nurse Specialist continued providing vital support throughout the year to adults, children, X-linked carriers, and wider families affected by CGD.

families in the UK and 47

patients outside the UK

Our membership increased by 205

We provided

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UK families with hardship payments through our family support fund

including individuals and families affected by CGD, medical professionals, and supporters.

We provided

Our email and telephone helpline fielded 54 requests for support and information.

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individuals with funded prepayment prescription certificates.

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Other moments this year

Communications

We sent 14 newsletters/update emails to our members with updates on CGD, rare disease research, patient stories, and fundraising.

Our social media presence continued to grow and through this we were able to update our followers on relevant news.

Funding

We were delighted to receive grants from various trusts and foundations this year which totalled £18,000. The grants will go towards our vital support services including our CGD Clinical Nurse Specialist.

Our team

We were sad to say goodbye to Niamh, our Community Fundraising and Marketing Officer in June. Niamh did a great job in her time with the charity, and we wish Niamh well in her future endeavours.

In October, we welcomed our new Fundraising and Marketing Officer Catherine Bean. Catherine will lead our fundraising and marketing efforts.

We are deeply grateful to Geoff Creamer for his remarkable dedication and service to our charity over the past 30 years. As a longstanding trustee and Chair of Trustees for nine years, Geoff has played an instrumental role in shaping the direction and strength of our work. His wisdom, commitment, and unwavering support have made a lasting impact on the charity and the CGD community. Geoff will continue to volunteer his time this year in supporting the Jeans for Genes campaign.

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Other moments this year

Governance

We welcomed Wayne Kitchener as our new Chair, with responsibility for managing our board of trustees and leading the strategic direction of the charity.

We welcomed Josh Stevens as our new Treasurer, taking over from Ning He, with responsibility for the charity’s financial management.

We held a number of long-term strategy meetings to shape out the direction of the organisation for the next three years.

The board numbered 9 trustees at the start of this financial year, and we ended with a total of 5. As of the date of this report, a further 2 recruits leaves the current board with 7 trustees.

We thank all current and past trustees for the donation of their time and expertise in the pursuit of our charitable objectives.

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Fundraising & Partnerships

As a small charity, we rely on donations to fund all our activities throughout the year — we receive no funding from governmental sources or from the delivery of services. Our team works phenomenally hard to raise funds from a variety of sources, and the generosity of our donors has allowed us to deliver for the CGD community for over 30 years.

Community Fundraising

We are incredibly proud — and deeply grateful — to share that, together, our amazing CGD community helped raise over £28,000 this year! Whether you ran a marathon, hosted a fundraiser, set up a regular donation, gave a oneoff gift, shared our content online, or shopped through a charity platform — you made a difference.

This incredible total is a testament to the generosity, energy, and commitment of our donors, fundraisers, and supporters. Every single action, no matter how big or small, has helped us provide vital services to families affected by CGD, fund our specialist nurse at Great Ormond Street Hospital, and continue our mission to support, inform, and empower.

Institutional Fundraising

This year, we were pleased to secure £18,000 in grant funding to support our vital Information and Support Services, including the work of our dedicated CGD Clinical Nurse Specialist. These grants play a crucial role in helping us continue to deliver high-quality, accessible support to individuals and families affected by CGD. We would like to extend our sincere thanks to Awards for All, whose generous grant will contribute towards several core elements of our service provision. This includes funding for our helpline, the production and distribution of our newsletters, the Family Support Fund, and a much-needed refresh of our website to ensure information remains current, accessible, and user-friendly.

We are also extremely grateful to The Hospital Saturday Fund for their support through a grant specifically directed toward the ongoing cost of our CGD Clinical Nurse Specialist.

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Fundraising & Partnerships

Jeans for Genes Campaign

A significant change in our fundraising activities this year was the reintroduction of the Jeans for Genes Campaign as an internal function. Previously this event has been run by partner organisations, such as Genetic Disorders UK and the Jeans for Genes Campaign charity, with the CGD Society receiving a licence fee as the founders of the event and holder of the trademark.

Following the closure of the last organisation to run this event, an offer was made by a key stakeholder to support a scaled back version of the fundraising week to maintain the momentum leading into the 30th anniversary in 2025.

This proposal turned out to be a winning formula. With low overheads and a focus on building relationships with schools, we ended the campaign year with a Grant Programme pot of nearly £150,000, the highest total allocated for nearly 10 years!

Like many charities, we faced significant challenges in the financial year 2024-2025 due to the ongoing cost of living crisis, which has affected donation levels and made fundraising increasingly difficult across the sector.

We are actively working with a comprehensive fundraising strategy focused on diversifying income streams - particularly through growing regular giving and building strong corporate partnerships - to help us meet our fundraising target moving forward.

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Membership fundraising stories

We’re always encouraged by the remarkable activities of our community, who embark on an array of challenges every year to fundraise for our charity. Below are some amazing stories from our superstar supporters this year.

Craig’s 100km run

Craig said: “Two of my nephews were born with CGD. On medication since birth, neither of them has had an easy start to life.

The oldest had a bone marrow transplant in 2015. With annual checkups and medication, he can now live life to the fullest - something he couldn't do before.

His younger brother has now also had his transplant. After months in the hospital, he was able to return home last year. While the process was more complex this time, he's gradually returning to ‘normal’ life and doing things he was never able to do before.”

We are incredibly grateful to Craig for taking on the extraordinary challenge of running 100km in support of CGD Society. His dedication and determination have not only raised vital awareness but also much-needed funds to support individuals and families affected by CGD.

Southwest Hertfordshire’s annual Vintage Sports Car Club BBQ

We’re incredibly grateful to Ian Cheese and the wonderful community of car enthusiasts from the SW Hertfordshire Vintage Sports Car Club, who once again hosted their annual summer BBQ in support of CGD Society.

This year’s event raised an amazing £681 and was held in honour of two brave young brothers — Bobby, who is currently undergoing treatment for CGD, and Ben, who has successfully completed his treatment. Their parents, Bonnie and David, along with their grandfather Rod, have been steadfast supporters of this fundraiser over the years, and we’re so thankful for their continued dedication to helping families affected by CGD.

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Membership fundraising stories

Alex’s run and cycle across Scotland

A heartfelt thank you to Alex for his phenomenal achievement — running and cycling coast-to-coast across Scotland in just one day to raise nearly £6,500 for CGD Society. On the 14th of September 2024, Alex covered an astonishing 23 miles on foot and 80 miles on and off road by bike, starting in Nairn and finishing in Glencoe. He completed the course in an incredible 11 hours and 40 minutes, placing 35th out of 400 participants. What an achievement!

Alex said: “My nephews Ben (10) and Bobby (9) have a very rare genetic disease called CGD and have spent years under the care of specialists at Great Ormond Street Hospital.

Ben had a successful bone marrow transplant in 2021 and has made a full recovery. Bobby had his transplant earlier this year and, although he has faced several complications, continues to show incredible strength. These two are hugely special and brave boys. Throughout their journey, The CGD Society has been by their side from day one.”

Becca’s 10k run

A huge thank you to our incredible supporter, Rebecca, for her determination and dedication to CGD Society. Rebecca was due to run the Great South Run on 20th October in support of our charity, but the event was sadly cancelled due to bad weather. Undeterred, she took to her local area and completed the run anyway, braving the rain, getting soaked, and still finishing with a smile. Even more inspiring, Rebecca raised over £600 to support our work with individuals and families affected by CGD.

Rebecca shared her reason for running:

“The CGD Society has been supporting my family since October 2022, when my son Elliot was diagnosed with CGD. They have been there through every hospital admission, every setback, every step of Elliot’s transplant - always answering questions and providing any kind of support we need.”

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Our plans for the future

The new year brings a new strategy for the CGD Society – learning from what we do well and listening to the needs of our community.

In 2024/25 we have worked hard to develop our activities and operations to run in a more streamlined and resource-efficient manner. Our achievement of a budget surplus in this year has been a key deliverable of our previous three-year strategy, one which has put us on a level footing to work for the future.

Strategy

We began the work with our staff and board of trustees last year to develop a new institutional strategy to guide us for the future years. Some unexpected departures from our board delayed the launch of this new plan until a new organisational structure was in place, which was achieved in early 2025. We are now in the final stages of consultation, with our board and staff carefully considering each aspect of our programme, and we expect this to be formally put into place in Summer 2025.

Support for the CGD community

Our new strategy puts families and patients are the heart of how we work. We have developed a series of guiding principles to ensure that our mission and vision are incorporated across our operations.

We will continue to use our platform to elevate the voices of patients with CGD, their families, and the wider genetic disorder community. As a charity it is our responsibility to advocate for our community at an institutional level, which is reflected in our new working strategy. This involves working with the NHS and other medical organisations to ensure that timely and comprehensive care is provided when it’s needed most. We will also work with partners to create access for holistic support services designed to meet the needs of the entire family.

We are also beginning a scope of work to redevelop our website, as we know that this source is a vital piece of information for our community and the medical professionals who support them, both at home and abroad. Our goal is to build a platform that is more user friendly with a better stock of up-to-date, high-quality information on what CGD is and how patients and families can be supported.

One of our key priorities is to further strengthen the voice of the CGD community in everything we do. We are working to establish a dedicated Community Panel — a group made up of individuals and families affected by CGD who will help shape the direction of our charity. This panel will provide valuable feedback on our work, highlight areas of unmet need, and ensure that our services, resources, and advocacy remain relevant, inclusive, and community led.

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Our plans for the future

By listening closely and working collaboratively, we aim to make sure the needs and experiences of the CGD community continue to drive and inspire our mission.

We are also keen to bring the community together more often, both in person and online. In the year ahead, we hope to organise a CGD Family Day — a chance for families to connect, share experiences, and enjoy time together in a supportive environment. In addition, we plan to expand our online events, creating more opportunities for people around the world to come together, hear from experts, and find strength in community.

Knowledge and thought leadership

A core tenet of our new strategy is to make sure that what we do is both well informed and in the best interests of the community. As part of this, our board, staff, and volunteers will continue holding our mid-year review meetings to analyse our strategic plans, that will help us note which activities are behind the planned delivery schedule and crucially what our priorities should be for the year ahead.

We will continue to review our individual services and activities to ensure our work is impactful:

Fundraising & partnerships

The new financial year also brings with it a new fundraising strategy, as we can only deliver impact as far as we can raise funds to pay for it. Our charity has gone through some difficult financial times over the past five years as a result of Covid-19, a cost-of-living crisis, and escalating global tensions. As such, we have shifted gears to focus on longer-term committed giving, both with our community as well as with corporate partners. This will ensure that we are more resilient to the peaks and troughs of charitable giving that hampers many organisations in our sector and allow us the time with our limited staff resources to reach out to new supporter communities.

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Our plans for the future

We also recognise that we have a unique position amongst charities of our size with our fundraising campaign, Jeans for Genes Week. Past work, including the successes of the most recent event in 2024, have shown that the campaign has a remarkable reach and name recognition that organisations even a hundred times our size struggle to achieve. This is all due to the hard work of the many stewards of this event over the last 30 years, which we are keen to continue going forward. A key focus of our three-year strategy is to rebuild this campaign whilst maintaining the minimal cost-base that was such as success in 2024.

Organisation & governance

The last year 2024/25 was a busy time for us behind the scenes, as we had to accept the resignations of some of our long-standing trustees, due to the maximum term-limit for directors as set out in our governing articles. These changes, in addition to the warm welcoming of a host of new members to our board in the last year, gave us an opportunity to reorganise our management structure to focus on dynamic decision making.

A part of this is the redevelopment of our subcommittee structure, built around two core trustee committees, Governance & Finance and Operations, and a selection of transitional committees to suit the priorities of the year, such as Nursing and Community, which will allow us to focus our limited staff and volunteer time more effectively. We also keen to investigate how we can open our forum to our members, experts, and partners, to build a mechanism to receive, consider and implement feedback from our community.

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Administrative information

The CGD Society is a charity registered with the Charity Commission of England & Wales (charity number 1143049) and a company limited by guarantee in England & Wales (company number 07607593). The charity is governed by its memorandum and articles of association dated 18 April 2011.

Our registered office is Nightengale House, 46-48 East Street, KT17 1HQ. Our primary mailing address is PO Box 454, Dartford, DA1 9PE.

Trustees and staff

Below is the list of individuals who served as trustees and directors during the year and/or up to the signing of this report:

Wayne Kitchener Chair of the Board

We are also grateful to our dedicated staff for their year-round service to the organisation:

Claire Liddle Executive Director

Niamh Carmichael (left April 2024) Fundraising & Marketing Officer Catherine Bean (joined October 2024) Fundraising & Marketing Officer Helen Braggins RGN RSCN Clinical Nurse Specialist

Medical advisory panel

Our work is supported by the Medical Advisory Panel which advises the charity on the provision of appropriate care for people with CGD. The panel comprises of:

Prof. David Goldblat t, MB ChB, PhD, Consultant Paediatric Immunologist at Great Ormond Street Hospital (GOSH) and Prof. of Vaccinology and Immunology .

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Administrative information

Dr David Lowe , MA MB BChir PhD, FRCP Consultant Clinical Immunologist, Royal Free London NHS Foundation Trust.

Dr Sergio Resenzweig , MD PHD University of Buenos Airess, Paediatric and Clinical Immunologist, Director of the Primary Immunodeficiency Clinic at the National Institutes of Health in the USA.

The board of trustees is responsible for the overall governance, policy and strategic direction of the CGD Society. The trustees, who are also directors for the purposes of company law, have the legal responsibility for the operations of the CGD Society and the use of resources in accordance with the objects of the charity. Trustees are elected to the board for a term of three years, up to a maximum of three consecutive terms.

The Executive Director is the staff lead for the organisation, reporting to the Chair of the trustees, responsible for the executive leadership and day-to-day operation of the charity in line with the trustees’ instructions. They report regularly on activities and key performance indicators which the trustees use to judge progress against the priorities for the year.

Public benefit

The trustees confirm that they have paid due regard to guidance issued by the Charity Commission in deciding what activities the charity should undertake. All our activities are in line with our given charitable objects, which is reviewed regularly by the board of trustees.

Risk management

The Trustees have overall responsibility for ensuring that the CGD Society is managing risk in a professional, responsible and constructive manner. The Trustees review the risk register every year to identify significant risks and agree mitigation tactics. The Trustees seek to ensure that all internal controls, and in particular financial controls, comply in all respects with best practice and the guidelines issued by the Charity Commission.

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Financial review

The UK remains a challenging landscape for charities of all sizes, with the continued impacts of inflation making it both more expensive to run a charity and more difficult for donors to give as much as they have done in the past. Like all organisations who work in the charitable health sector, we must make decisions about how to balance our intention to support our CGD community with the reality of limited resources.

With this in mind, our trustees and leadership agreed on a deficit budget for the year, where we would use a portion of our reserves to invest in the infrastructure to better position CGD Society to deliver for our community for years to come. Therefore, we were pleased to end the financial year with a surplus position after a series of deficit years which had put pressure on our long-term reserves.

Income and expenditure

Our total income for the year increased to £360,000 (2024: £107,000), of which the largest component was donations and gifts which accounted for £348k, or 97% of total income (2024: £93,000, 86%). The significant increase in income was due to the Jeans for Genes campaign which was relaunched as an internal fundraising activity. In prior years, this campaign had been run by partner charities, with the CGD Society receiving a licence fee to use the Jeans for Genes trademarks and intellectual properties.

Included within donations is our grant funds received, which this year increased to £18k, which represented 5% of our total donations (2024: £9,000, 10%). We are grateful to our funders as their contributions, the majority of which are restricted to our projects, allow us to directly deliver our nursing and information services.

23

Financial review

In the year we also received other income of £7,000 (2024: less than £1,000), which represents proceeds received from the winding down of a partner charity, the Jeans for Genes Campaign, in respect of a capital loan which the CGD Society wrote off in the prior financial year.

Our total spend for the year was £205,000, an increase of £4,000 from the prior year (2024: £201,000).

Our spend on charitable activities, £121,000 remains the largest proportion of our total expenditure at 57% (2024: £123, 61%). This includes spend on direct support for those living with CGD, which supported the nursing service, the family support fund, as well as the email and phone helpline. Education is another key form of support to our members, which we provide via website content development and information booklets. This year our spend on education was £75,000, or 37% of total expenditure (2024: 29,000, 14%), with the increase attributed to the relaunch of the Jeans for Genes campaign which helps promotes wider awareness of genetic disorders.

Our remaining expenditure consists of £4,000 / 2% on essential governance costs (2024: £3,000, 1%), and £84,000 / 41% on raising funds (2024: £38,000, 20%). The increase in fundraising costs is another consequence of running the Jeans for Genes campaign as an internal activity, rather than licensing this out to another charity, however we are very pleased with the overall level of funds this activity raised despite the late start in the year (see: Fundraising & partnerships – Jeans for Genes Campaign, page 15 ). We expect the percentage of fundraising costs to decrease in future years, as we have not yet recognised the expenditure of the Jeans for Genes grant programme due to the timing of the grant awards after the year end.

24

Financial review

We had no other expenditure in the year, whereas the balance in the previous year (2024: £40,000) represented a balance written-off from the capital loan to the Jeans for Genes Campaign, a partner charity of the CGD Society, to support the winding down of that charity.

Net movement of funds

Overall, the net movement of funds was a surplus of £154,000 (2024: deficit of £83,000). One qualifying note to this is that this does not include the Jeans for Genes grant programme costs of £145,000 which will be recognised in the next financial year 2025/26 due to the timings of the awards.

However, even with this grant programme factored in we have still achieved a net positive position for the year, which is a fantastic achievement after a series of deficit years. This is a testament to the continuing effort and dedication of our staff and our volunteers.

We hope to continue this in future years, whilst using our funds to invest in our people to continue to deliver impact and change for many years to come.

25

Financial review

Investment performance

Our charity has longer-term financial reserves invested in a medium risk portfolio and managed by Evelyn Partners. Over the year to March 2025, we have seen high interest rates as a result of a few years of consistently high inflation as well as some more recent volatility in global markets. Our overall goal with the investment portfolio is to achieve a gain of at least 3% per year, which we fell just shy of this year at 2.6%.

Our investment portfolio exhibited a total gain of £4,000 during the year (2024: gain of £11,000). As of 31 March 2025, the portfolio value stood at £169,000 (2024: £165,000).

Reserves

Our charity’s policy is that unrestricted funds which have not been designated for a specific use should be maintained equivalent to between six- and twelve-month’s expenditure. This level is reviewed annually by the trustees as part of the annual budget, last reaffirmed in April 2025. The trustees consider that this level will ensure we can continue current activities in the event of a significant drop in funding while consideration is given to ways in which additional funds may be raised.

At the year ended 31 March 2025, we maintained free reserves of £129,000, which corresponds to 6.6 months of budgeted core expenditure (2024: £69,000, 9.6 months). We have also maintained two board designated reserves for the end of the year:

26

Statement of Trustees' responsibilties

TThe Trustees present their annual report for the year ended 31st March 2025 in compliance with the Companies Act 2006 and the Charities Act 2011, together with the financial statements for that year. The financial statements also comply with the Companies Act 2006, the charity’s governing document, and the relevant Statement of Recommended Practice (the Charities SORP [FRS 102]).

Responsibilities

The Trustees are responsible for preparing the Trustees’ report and the financial statements in accordance with applicable laws and regulations.

Under company law, the trustees (who are also directors of the CGD Society) must not approve the financial statements unless they are satisfied that they give a true and fair view of the state of affairs of the company and the group and of the net incoming resources for that period.

In preparing this report, the directors have taken advantage of the small companies' exemptions provided by Section 415 of the Companies Act 2006.

Disclosure of information

We, the directors of the company who held office at the date of approval of these financial statements as set out above each confirm, so far as we are aware, that:

The trustees’ annual report and financial statements included within were approved by way of a proper vote by the board of trustees on 26th July 2025 and signed on their behalf by:

………………………. ………………………. Wayne Kitchener & Josh Stevens Chair of the Board Treasurer

27

THE CHRONIC GRANULOMATOUS DISORDER SOCIETY INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF THE CHRONIC GRANULOMATOUS DISORDER SOCIETY I report lo Ihe Iru8leé$ on my txèmlnèllon ol the finanelal 8tal8ment8 of The Chfonlc Granulom8lous Dl8ord8r Society {Ihe charltyl for Ihg yeof &nded 31 March 2025. R•$pon8lblllth8 and ba818 of r•port As the trust88s of the charity land 8180 118 dlroclors for the Pu￿0$0$ ol company lawl. you are responslble lor thts prepar811on of th& finon¢lal 81atemgnl8 In otxordAnc8 wllh Ihb requlrem•n18 01 Iho Compan1•8A¢l 2006. Havlng $allsfted my8•11 that lh6 flnanclal 8lal8ments ol Ihg chodly ar8 not raqulred lo b8 audited under Parl 16 01 the Comp8nl8s Act 2006 and are ellglble for Indopondgnl &x¥mln8llon. I report In respect ol my examlnallon ol tha ¢harity'$ flnanclal s101omenl$ carrfed out undor secllon 145 01 the Charlll88 A¢1 2011. In c8rrylng oul my exarnlnallon I havo followed tho Dliectlonj glvan by Iha Charlly CommlBslon und8r 80cllon 145(5llbl of lh• cha￿lIe8Act 2011. Ind*p•ndent •xomln•r'8 8lat•monl Sln¢e the thartty's gr05¥ Incom8 exceeded £250,000. Ihe Independent gxamln8r musl b8 o m8mb8r ol a body1Ssi8d In $o¢lon 145 01 tho Chgrllle8 Act 2011. 1 ojnflrm Ihal l am qu8iined kn underl8ke Ihg gX8mln8llon b8cous6 l am • m8mb8r ol UK, whlch18 ong oflho118led bodlo8. I have completed my axamlnallon. I confirm Ihal no mallerg havo ￿me lo my allen1￿ In ¢onngdlon wlth the examlnallon glvlng me ¢au$8 lo b8llav8 Ihal In any malerial resp8cl'. accounllng fgoords worg nol kept In respect ol th8 charlty as requlred by soctbon 386 01 tho C￿panIo8 Ael 2006. th• nn8nc1818181omon18 do nol accord wllh Ihos8 r8¢0rd8', ly th8 flnon¢io1 $1olomgnl$ do not eomply wllh lh8 accounling requlr•m&nl8 018ocllon 396 of the Compan¢es Act 2006 other Ihan any requlr¢menl Ihal th8 financlal 31alemenlg glvo a true and farr vlgw. whl¢h 1$ nol o matter conBld8r6d 88 part ol an Indep&ndonl gxamlnBllon.' or Ihv flnandal 81alomonl8 h9v• nol boon prepared In aceord4nce wllh Iho m8lhod8 and prlndplo$ of Ihg Slalemenl of Rocommnded Pr8oli¢4 for a¢counllng and reportlng by charilles appll¢abl& to ch&rfll88 prepartng Iheli finan¢1818lalemenl8 In accordanc8 wlth th8 Flnandal R8POrtlng Slandaid appllcabl8 In tho UK and Republlc of118land (FRS 102). I hove no concern8 and hav8 Comg acro$$ no olhgr motlers in connectlon wllh the examlnallon lo whlch 811onllon should bo drawn In Ihl$ roport In order io enablo a proper und8ist8ndlng of Ihe flnandal Blal8m8nts to b8 reached. Hazel Doy Bsc (Hons) FCA DChA Xelnadln Nlghllngal8 Hou80 4648 Ea81 Street Epsom Surroy KT17 1HQ 28

References

29

Statement of Financial Activities

(Including an income and expenditure account)

For the year ended 31 March 2025

Notes
Income and endowments from:
Donations and legacies
2
Investments
3
Other income
4
Total income
Expenditure on:
Raising funds
5
Charitable activities
6
Other expenditure
11
Total expenditure
12
Net income/(expenditure)
Reconciliation of funds:
Total funds brought forward
Total funds carried forward
and net movement in funds
Net gains/(losses) on
investments		 Unrestricted
Restricted
Total
Unrestricted
Restricted
Total
funds
funds
funds
funds
2025
2025
2025
2024
2024
2024
£
£
£
£
£
£
330,973
17,000
347,973
87,272
5,700
92,972
4,516
-
4,516
13,844
-
13,844
7,133
-
7,133
644
-
644
342,622
17,000
359,622
101,760
5,700
107,460
84,299
-
84,299
37,777
-
37,777
113,115
7,856
120,971
108,041
14,951
122,992
-
-
-
39,970
-
39,970
197,414
7,856
205,270
185,788
14,951
200,739
(285)
-
(285)
10,729
-
10,729
144,923
9,144
154,067
(73,299)
(9,251)
(82,550)
283,817
5,799
289,616
357,116
15,050
372,166
428,740
14,943
443,683
283,817
5,799
289,616

The statement of financial activities includes all gains and losses recognised in the year. All income and expenditure derive from continuing activities.

Annual Report & Accounts 2024/25

30 CGD Society

Balance Sheet

For the year ended 31 March 2025

Notes
Fixed assets:
Investments
13
Current assets:
Debtors
14
Cash at bank and in hand
Total current assets
15
Net current assets
Total assets less current liabilities
The funds of the charity:
Restricted funds
17
Unrestricted funds
18
Total funds of the charity
Creditors: amounts falling
due within one year		 Total
2025
£
169,080
4,921
351,282
356,203
(81,600)
274,603
443,683
14,943
428,740
443,683		 Total
2024
£
164,850
60,133
84,999
145,132
(20,366)
124,766
289,616
5,799
283,817
289,616

The company is entitled to the exemption from the audit requirement contained in section 477 of the Companies Act 2006, for the year ended 31 March 2025.

The directors acknowledge their responsibilities for complying with the requirements of the Companies Act 2006 with respect to accounting records and the preparation of financial statements.

The members have not required the company to obtain an audit of its financial statements for the year in question in accordance with section 476.

These financial statements have been prepared in accordance with the provisions applicable to companies subject to the small companies regime.

The financial statements were approved by the trustees on 26 July 2025 .

Mr J D Stevens

Treasurer | Trustee

Company registration number 07607593 (England and Wales)

Annual Report & Accounts 2024/25

31 CGD Society

Notes to the Financial Statements

For the year ended 31 March 2025

1 Accounting policies

1.1) Accounting convention

The financial statements have been prepared in accordance with the charity's governing document, the Companies Act 2006, FRS 102 "The Financial Reporting Standard applicable in the UK and Republic of Ireland" and the Charities SORP "Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)". The charity is a Public Benefit Entity as defined by FRS 102.

The charity has taken advantage of the provisions in the SORP for charities not to prepare a statement of cash flows.

The financial statements are prepared in sterling, which is the functional currency of the charity. Monetary amounts in these financial statements are rounded to the nearest £.

The financial statements have been prepared under the historical cost convention, with the exception of investments which are included at market value. The principal accounting policies adopted are set out below.

Cash donations are recognised on receipt. Other donations are recognised once the charity has been notified of the donation, unless performance conditions require deferral of the amount. Income tax recoverable in relation to donations received under Gift Aid or deeds of covenant is recognised at the time of the donation.

1.5) Expenditure

Expenditure is recognised once there is a legal or constructive obligation to transfer economic benefit to a third party, it is probable that a transfer of economic benefits will be required in settlement, and the amount of the obligation can be measured reliably.

Expenditure is classified by activity. The costs of each activity are made up of the total of direct costs and shared costs, including support costs involved in undertaking each activity. Direct costs attributable to a single activity are allocated directly to that activity. Shared costs which contribute to more than one activity and support costs which are not attributable to a single activity are apportioned between those activities on a basis consistent with the use of resources. Central staff costs are allocated on the basis of time spent, and depreciation charges are allocated on the portion of the asset’s use.

1.2) Going concern

At the time of approving the financial statements, the trustees have a reasonable expectation that the charity has adequate resources to continue in operational existence for the foreseeable future. Thus the trustees continue to adopt the going concern basis of accounting in preparing the financial statements.

1.6) Fixed asset investments

Fixed asset investments are initially measured at transaction price excluding transaction costs, and are subsequently measured at fair value at each reporting date. Changes in fair value are recognised in net income/(expenditure) for the year. Transaction costs are expensed as incurred.

1.3) Charitable funds

Unrestricted funds are available for use at the discretion of the trustees in furtherance of their charitable objectives.

Restricted funds are subject to specific conditions by donors or grantors as to how they may be used. The purposes and uses of the restricted funds are set out in the notes to the financial statements.

1.4) Income

Income is recognised when the charity is legally entitled to it after any performance conditions have been met, the amounts can be measured reliably, and it is probable that income will be received.

1.7) Cash and cash equivalents

Cash and cash equivalents include cash in hand, deposits held at call with banks, other short-term liquid investments with original maturities of three months or less, and bank overdrafts. Bank overdrafts are shown within borrowings in current liabilities.

1.8) Financial instruments

The charity has elected to apply the provisions of Section 11 ‘Basic Financial Instruments’ and Section 12 ‘Other Financial Instruments Issues’ of FRS 102 to all of its financial instruments.

( continued on next page)

Annual Report & Accounts 2024/25

32 CGD Society

Notes to the Financial Statements

For the year ended 31 March 2025

1 Accounting policies (continued)

(1.8 Financial Instruments)

Financial instruments are recognised in the charity's balance sheet when the charity becomes party to the contractual provisions of the instrument.

measured at the present value of the future payments discounted at a market rate of interest. Financial liabilities classified as payable within one year are not amortised.

Debt instruments are subsequently carried at amortised cost, using the effective interest rate method.

Financial assets and liabilities are offset, with the net amounts presented in the financial statements, when there is a legally enforceable right to set off the recognised amounts and there is an intention to settle on a net basis or to realise the asset and settle the liability simultaneously.

Basic financial assets

Basic financial assets, which include debtors and cash and bank balances, are initially measured at transaction price including transaction costs and are subsequently carried at amortised cost using the effective interest method unless the arrangement constitutes a financing transaction, where the transaction is measured at the present value of the future receipts discounted at a market rate of interest. Financial assets classified as receivable within one year are not amortised.

Trade creditors are obligations to pay for goods or services that have been acquired in the ordinary course of operations from suppliers. Amounts payable are classified as current liabilities if payment is due within one year or less. If not, they are presented as non-current liabilities. Trade creditors are recognised initially at transaction price and subsequently measured at amortised cost using the effective interest method.

Derecognition of financial liabilities

Financial liabilities are derecognised when the charity’s contractual obligations expire or are discharged or cancelled.

1.9) Taxation

The charity is exempt from corporation tax on income and gains to the extent that these are applied to its charitable objects.

Basic financial liabilities

Basic financial liabilities, including creditors and bank loans are initially recognised at transaction price unless the arrangement constitutes a financing transaction, where the debt instrument is

1.10) Retirement benefits

Payments to defined contribution retirement benefit schemes are charged as an expense as they fall due.

Annual Report & Accounts 2024/25

33 CGD Society

Notes to the Financial Statements

For the year ended 31 March 2025

2 Income from donations and legacies

Donations and gifts
Grants
Total donations and legacies
Breakdown of grants:
Total grants
Other grantors who wished to
remain anonymous
National Lottery Awards for All
The Hospital Saturday Fund
D'Oyly Carte Charitable Trust
Douglas Arter Foundation
Michael and Anna Wix Trust
B & P Glasser Charitable Trust		 Unrestricted
Restricted
Total
Unrestricted
Restricted
Total
funds
funds
funds
funds
2025
2025
2025
2024
2024
2024
£
£
£
£
£
£
329,973
-
329,973
83,572
200
83,772
1,000
17,000
18,000
3,700
5,500
9,200
330,973
17,000
347,973
87,272
5,700
92,972
-
10,000
10,000
-
-
-
-
2,000
2,000
-
-
-
-
-
-
3,500
-
3,500
-
-
-
-
500
500
-
-
-
200
-
200
1,000
-
1,000
-
-
-
-
5,000
5,000
-
5,000
5,000
1,000
17,000
18,000
3,700
5,500
9,200

3 Income from investments

Dividends and interest
Loan interest received
Other income
Other income		 Unrestricted
Unrestricted
funds
funds
2025
2024
£
£
4,516
4,142
-
9,702
4,516
13,844
Unrestricted
Unrestricted
funds
funds
2025
2024
£
£
7,133
644

4 Other income

Other income in 2025 includes proceeds received from the Jeans for Genes Campaign charity as part of the winding down of that charity, in respect of a capital loan written off in the prior financial year.

Annual Report & Accounts 2024/25

34 CGD Society

Notes to the Financial Statements

For the year ended 31 March 2025

5 Expenditure on raising funds

Fundraising and publicity:
Direct fundraising costs
Staff costs
Total fundraising and publicity
Investment management
Total expenditure on raising funds		 Unrestricted
Unrestricted
funds
funds
2025
2024
£
£
65,322
16,755
18,977
20,718
84,299
37,473
-
304
84,299
37,777

6 Expenditure on charitable activities

Charitable activities
Direct costs
Share of support costs (note 7)
Total expenditure on charitable activities
Analysis by fund:
Unrestricted funds
Restricted funds
Previous year:
Charitable activities
Direct costs
Share of support costs (note 7)
Total expenditure on charitable activities
Analysis by fund
Unrestricted funds
Restricted funds		 Relief
Education
Research
Governance
Total
2025
2025
2025
2025
2025
£
£
£
£
£
31,601
44,281
-
4,472
80,354
9,956
30,661
-
-
40,617
41,557
74,942
-
4,472
120,971
33,701
74,942
-
4,472
113,115
7,856
-
-
-
7,856
41,557
74,942
-
4,472
120,971
Relief
Education
Research
Governance
Total
2024
2024
2024
2024
2024
£
£
£
£
£
64,705
10,326
5,000
2,500
82,531
22,265
18,196
-
-
40,461
86,970
28,522
5,000
2,500
122,992
72,019
28,522
5,000
2,500
108,041
14,951
-
-
-
14,951
86,970
28,522
5,000
2,500
122,992

Annual Report & Accounts 2024/25

35 CGD Society

Notes to the Financial Statements

For the year ended 31 March 2025

7 Support costs allocated to activities

Staff costs
Support consultants' fees
Analysed between:
Relief
Education		 2025
2024
£
£
37,617
37,461
3,000
3,000
40,617
40,461
9,956
22,265
30,661
18,196
40,617
40,461

8 Net movement in funds

The net movement in funds is stated after charging/(crediting): 2025
2024
£
£
Fees payable for the independent examination of the charity's financial statements 2,400
1,675

9 Trustees

None of the trustees (or any persons connected with them) received any remuneration or benefits from the charity during the year, nor for the prior year.

There were trustees’ expenses paid for the year ended 31 March 2025 totalling £483 (2024: £466) to 3 trustees (2024: 6).

10 Employees

Number of employees
The average monthly number of employees during the year was:
Employment costs
Wages and salaries
Social security costs
Other pension costs		 2025
2024
Headcount
Headcount
2
2
2025
2024
£
£
53,025
54,430
137
-
3,432
3,749
56,594
58,179

There were no employees whose annual remuneration was more than £60,000.

Remuneration of key management personnel

The aggregate employee benefits paid to key management personnel during the year were £46,132 (2024: £46,178).

Annual Report & Accounts 2024/25

36 CGD Society

Notes to the Financial Statements

For the year ended 31 March 2025

11 Other expenditure

Other expenditure

Unrestricted Unrestricted
funds funds
2025 2024
£ £
- 39,970

Other expenditure in 2024 relates to a capital loan balance to the Jeans for Genes Campaign charity which was written off to facilitate the winding down of that charity.

12 Gains and losses on investments

Unrestricted Unrestricted
funds funds
2025 2024
Gains/(losses) arising on: £ £
Revaluation of investments (285) 10,729

13 Fixed asset investments

Cost or valuation:
At 1 April 2024
Additions
Valuation changes
At 31 March 2025
Carrying amount:
At 31 March 2025
At 31 March 2024		 Listed
Unlisted
Total
investments
investments
investments
£
£
£
164,849
1
164,850
4,515
-
4,515
(285)
-
(285)
169,079
1
169,080
169,079
1
169,080
164,849
1
164,850

14 Debtors

Amounts falling due within one year
Prepayments and accrued income
Other debtors
Total debtors		 2025
2024
£
£
4,789
-
132
60,133
4,921
60,133

Annual Report & Accounts 2024/25

37 CGD Society

Notes to the Financial Statements

For the year ended 31 March 2025

15 Creditors

----- Start of picture text -----
|||| |---|---|---| |2025|2024| |£|£| |Amounts falling due within one year| |Taxation and social security|949|1,392| |Trade creditors|25,367|15,738| |Other creditors|428|611| |Accruals and deferred income|54,856|2,625| |Total creditors|81,600|20,366|

----- End of picture text -----

16 Retirement benefit schemes

----- Start of picture text -----
|||| |---|---|---| |2025|2024| |£|£| |Defined contribution schemes| |Charge to profit or loss in respect of defined contribution schemes|3,432|3,749|

----- End of picture text -----

The charitable company contributes to individual personal pensions for staff; contributions are charged to the income and expenditure account as they become payable.

17 Restricted funds

The restricted funds of the charity comprise the unexpended balances of donations and grants held on trust subject to specific conditions by donors as to how they may be used.

----- Start of picture text -----
|||||| |---|---|---|---|---| |At 1 April|Incoming|Resources|At 31 March| |2024|resources|expended|2025| |£|£|£|£| |National Lottery Awards for All|5,799|10,000|(2,569)|13,230| |-| |Information and Support Fund|5,000|(3,287)|1,713| |-|-| |The Hospital Saturday Fund|2,000|(2,000)| |Total restricted funds|5,799|17,000|(7,856)|14,943| |Previous year:| |At 1 April|Incoming|Resources|At 31 March| |2023|resources|expended|2024| |£|£|£|£| |Family Support Fund|158|5,700|(5,858)|-| |-|-| |Orchard Therapeutics (Family Support)|3,000|(3,000)| |-|-| |Orchard Therapeutics (Newsletter sponsorship)|1,892|(1,892)| |-| |National Lottery Awards for All|10,000|(4,201)|5,799| |Total restricted funds|15,050|5,700|(14,951)|5,799|

----- End of picture text -----

(continued on next page)

Annual Report & Accounts 2024/25

38 CGD Society

Notes to the Financial Statements

For the year ended 31 March 2025

(continued: Note 17 - Restricted funds)

These funds are restricted for the following purposes:

National Lottery Awards for All - this is towards the information and support service provided by the charity.

Hospital Saturday Fund - this is funds for the clinical nursing service provided by the charity with Great Ormond Street Hospital

18 Unrestricted funds

The unrestricted funds of the charity comprise the unexpended balances of donations and grants which are not subject to specific conditions by donors and grantors as to how they may be used. These include designated funds which have been set aside out of unrestricted funds by the trustees for specific purposes.

General fund
Nursing fund
Jeans for Genes (Support)
Jeans for Genes (Grants)
Total unrestricted funds
Previous year:		 At 1 April
Incoming
Resources
Transfers
Gains and
At 31 March
2024
resources
expended
losses
2025
£
£
£
£
£
£
68,865
342,622
(197,414)
(84,970)
-
129,103
154,922
-
-
-
(285)
154,637
60,030
-
-
(60,030)
-
-
-
-
-
145,000
-
145,000
283,817
342,622
(197,414)
-
(285)
428,740
General fund
Nursing fund
Jeans for Genes (Support)
Total unrestricted funds		 At 1 April
Incoming
Resources
Transfers
Gains and
At 31 March
2023
resources
expended
losses
2024
£
£
£
£
£
£
116,774
97,605
(145,514)
-
-
68,865
140,342
4,155
(304)
-
10,729
154,922
100,000
-
(39,970)
-
-
60,030
357,116
101,760
(185,788)
-
10,729
283,817

The designated funds are allocated by the board of trustees for the following purposes:

Nursing fund – These are funds set aside to cover the clinical nursing service provision with Great Ormond Street Hospital for the next 3 years.

Jeans for Genes Grant Programme – These are funds allocated for the provision of core and project funding grants to other primary genetic disorder organisations, which are awarded in the following financial year.

Jeans for Genes support – These funds represented amounts set aside for the launch of the new fundraising campaign following the winding down of the separate Jeans for Genes Campaign charity

Annual Report & Accounts 2024/25

39 CGD Society

Notes to the Financial Statements

For the year ended 31 March 2025

19 Analysis of net assets between funds

At 31 March 2025
Investments
current assets/(liabilities)
Total net assets
At 31 March 2024
Investments
current assets/(liabilities)
Total net assets		 Unrestricted
Restricted
Total
funds
funds
2025
2025
2025
£
£
£
169,080
-
169,080
259,660
14,943
274,603
428,740
14,943
443,683
Unrestricted
Restricted
Total
funds
funds
2024
2024
2024
£
£
£
164,850
-
164,850
118,967
5,799
124,766
283,817
5,799
289,616

20 Related party transactions

Two trustees of the Chronic Granulomatous Disorder Society also serve as trustees of a related charity, the Jeans for Genes Campaign. In the prior year an amount owing as repayment of a capital loan from the Jeans for Genes Campaign charity to the Chronic Granulomatous Disorder Society of £39,970 was written off. This agreement was to facilitate the winding down of that related charity.

There were no disclosable related party transactions during the year.

Annual Report & Accounts 2024/25

40 CGD Society

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Thank you!
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Thank you to all members and fundraisers, volunteers, staff, sponsors, trustees and our medical panel for their continued support. We couldn't do it without you.

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