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2024-03-31-accounts

Company no 07607593 Registered charity no 1143049

CGD SOCIETY

ANNUAL REPORT & FINANCIAL STATEMENTS 2023-2024

Contents

About our charity 2

Statement of Trustees’ responsibilities 3

Trustees’ report 5 Our charity 5 About chronic granulomatous disorder 5 Shannon’s story: How to live with and scold CGD in your late teens 5, 6 What did we do this year? 7, 8, 9 Medical materials update 7 Immunology Study Day 7 Immunology and Allergy Nursing Conference 8 CGD Study Day 8 Online get togethers 9 Rare disease day 2024 9 This year’s highlights 10,11,12 Where did our income come from? 13, 14 Membership fundraising stories 15 Sophie and Simon’s Chicago marathon 15 Bob’s BMT journey 15 Hogsback Chapter 16 Chatham Town FC 16 Expenditure, investments and reserves 17, 18 What do we plan to do next year? 19, 20, 21 Summary 22 Thank you! 23 Financial statements for the year ended 31st March 2023 24 Independent examiner’s report 25 Statement of financial activities 29 Balance sheet 31 Notes to the financial statements 32 References 20 Appendix: CGD Society – Theory of Change 21

01

About our charity

Trustees

Annabel Griffiths - Chair

(appointed September 2021, resigned April 2024) Geoff Creamer – Governance Secretary (appointed April 2011, resigned November 2024) Ning He – Treasurer (appointed October 2015)

Francis Drobniewsk i (appointed September 2023, resigned May 2024) Chris Hutchings (appointed October 2023, resigned April 2024) Alan Keffler (appointed September 2023) Wayne Kitchener (appointed October 2023) Chikai Lai (appointed October 2019) Michael Niles (appointed October 2023, resigned April 2024) Kultar Shahi (appointed March 2022; resigned August 2023)

Executive Director: Claire Jeffries

Community Fundraising & Marketing Officer: Niamh Carmichael (appointed May 2022) Clinical Nurse Specialist: Helen Braggins RGN RSCN

Registered office: c/o Tudor John, 46-48 East Street, KT17 1HQ Principal office: PO Box 454, Dartford DA1 9PE

Independent Examiner: Tudor John, Nightingale House, 46-48 East Street, KT17 1HQ Bankers: Barclays Corporate, 1 Churchill Place, London E14 5HP Solicitors: Hempsons, 100 Wood Street, London, EC2V 7AN

Investment advisers: Evelyn Partners, 4th Floor, Portwall Place, Portwall Lane, Bristol, BS1 6NA

Medical Advisory Panel:

Our GOALS

The trustee Board is obliged to ensure that this charity meets its charitable objects as stated in the Articles of Association:

the relief of persons suffering from CGD or other primary immune deficiencies or related illnesses

Our vision, mission, and strategy

Our vision statement:

enabling families and individuals affected by CGD to live life to the full.

Our mission : to be the leading source of information and support for individuals and families affected by CGD in the UK and around the world, by sharing the learnings and expertise from patients and the medical professionals who treat them.

02

Statement of Trustees' responsibilties

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 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.

Structure, Governance, and Management

Governing document

The CGD Society is a registered charity and company limited by guarantee and governed by its memorandum and articles of association dated 18th April 2011.

Trustees

The board of trustees is responsible for the overall governance, policy and strategic direction of the CGD Society. The Trustees 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 serve on the board for a period of three years that is renewable with Board agreement three times. Geoff Creamer resigned at the Annual General Meeting (AGM) 29th October 2022 but was reappointed even though he has exceeded this nine-year limit. Authority for some activities is delegated to subcommittees who have defined terms of reference and are populated by Trustees, staff, external advisors and volunteers as appropriate. The charity’s work is supported by the Medical Advisory Panel which advises the charity on the provision of appropriate care for people with CGD.

Public benefit

The Trustees confirm that they have complied with the duty in section 17(5) of the Charities Act 2011 to have due regard to the guidance issued by the Charity Commission on public benefit.

Executive management

The executive organisation is led by our Executive Director who reports to the Chair of Trustees. She publishes a quarterly report and key performance indicators which the trustees use to judge progress against our priorities for the year.

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.

03

Trustees' report

The Trustees present their annual report for the year ended 31st March 2024 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]).

Our Charity

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 1,636 members of which the majority are affected individuals or family members; the remainder are supporters and medical professionals. Of those members, around 675 are in the UK and 491 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 128 new members joining in the financial year 2023–2024.

About Chronic Granulomatous Disorder

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; the majority of 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’ having inherited 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.

04

Shannon’s Story How to scold CGD in your late teens

Having a chronic illness during your late teens is never easy. Particularly an immunodeficiency disorder, which at times can make you look completely fine one week and then the next you’re on your way to the local hospital for an overnight stay. From my understanding of CGD, many cases are with young children, so living with it during my teens has felt like a very niche experience at times, particularly as a girl. My type of CGD is a p40 deficiency which is the rarest form, so this also added on to the lack of relatability I’ve felt so far in my CGD journey. But I hope that by sharing a bit of my story, it will help other young people know that you’re never alone and it’s okay to feel overwhelmed with it all. Who could blame us?

For most of my life my diagnosis was Crohn’s disease, due to inflammation in my bowel and stomach (at times) and mouth ulcers picked up by my dentist as a toddler. A decade of immunosuppressants to dampen what they thought was an overactive immune system, and many trips to routine appointments. The usual. However, during March 2021, I was admitted into hospital very ill. I often reminisce back to a memory of my mum and I at the end of that long and strenuous two and a half weeks, walking back from Queen's Medical Centre’s staff roof garden joking between us about whether I had Crohn’s or not. As we walked onto the ward and looked down the corridor to the outside of my room, there was a group of new faces waiting for my return; one of them being who I know now as one of my main immunologists. “So, here’s a diagram of your immune cells and bacteria”.

I’ve spent the last three-ish years attempting to come to terms with a new diagnosis, which seems easy because a portion of that process is reading all the lovely, fabulous paperwork about the condition. But if you combine that part with the emotional rollercoaster one must go through when relearning their body’s mechanisms and all the questioning of the past decade of their medical life, plus trying to continue living as normal of a life as you can at 15, 16, 17 and now 18, it suddenly seems like the biggest thing your life has ever thrown at you.

Now, let’s not forget the big factor here. CGD is not one to wait for you to emotionally process everything and then turn up at its door saying, “Ok! I’m ready!”.

Whilst writing this blog, I’m currently recovering from my bone marrow transplant (BMT), a known cure for CGD. It’s been a couple months since I’ve been discharged and so far things are going well. I don’t remember the first discussions about having a BMT as well as I do that ward corridor, but what I do remember is the feeling of anticipation and dread before.

It’s something you’re taught about in the conversation of cancer rather than an immunodeficiency, so it was interesting and promising to hear I could be cured. So far, they’ve done one cell pop test and my CGD is deemed to be gone. My BMT was eventually delayed a month and a bit because of, you guessed it, the star of the show: CGD! I ended up catching rhinovirus, COVID, and some other bacterial infections. It was almost like it was clinging on for one final time just to make a point. The chemo week went by ridiculously fast. After transplant, I was visited in hospital by the amazing CGD clinical nurse specialist, Helen, and we discussed some options about how the CGD Society can support me further in my recovery.

05

“I hope what I’ve shared will help those reading, or at the very least provide entertaining ways to scold CGD to oblivion.”

One aspect I’ll remember for life is going through IVF. All women or girls who must have chemo that will affect their fertility are given this option. One reason being I started the fertility injections on my 18th birthday. I can’t say that was on my list, but that’s just life. But also because of the feelings surrounding the three-week process and my age. It felt daunting and invasive, which conflicted with my understanding that it was so very important to give my future self a chance at having kids if I turned out to be infertile from the treatment. A particular issue that came up was the scans being internal. I’ve highlighted this aspect to encourage advocacy within anyone relating to this part of my story. After expressing to the IVF clinic that I wasn’t comfortable with the scans being internal, they happily opted to scanning through my abdomen instead. With my feedback, they are going to offer this option to all young patients. One thing I’ve learned from this is that advocating for myself was the best thing I could have done, rather than just ‘dealing with it’ as many of us chronic illness-havers are used to doing, and I hope this calms any worries some may have about the subject.

My experience summarised here may seem vastly negative but, to highlight an amazing thing that has come out of it, my hospital will now be testing any female paediatric gastro patients that come through their care to rule out any chance of it being mistaken for CGD. Up until this point only boys were being tested for CGD to rule it out, so this positive step will hopefully benefit many people. From what we’ve heard, it already has!

There’s still a lot of hurdles in my journey that I’ve got to go through, but I’m doing well. I hope what I’ve shared will help those reading, or at the very least provide entertaining ways to scold CGD to oblivion.

We would like to thank Shannon for volunteering her time to write this story.

06

What did we do this year?

Medical Materials Update

We know how valuable our CGD information booklets and leaflets are to families and medical professionals. In the summer of 2023, we worked with Costello Medical on a pro bono project to review and update some of those materials. Using data to identify our most downloaded and read materials Costello reviewed and updated 2 of our medical guides – A Guide to Bone Marrow Transplantation for CGD and a Guide for Female X-linked CGD Carriers. They also reviewed and updated 3 webpages – Lupus and carriers of X-linked CGD, FAQs on X-linked carrier issues, and Liver abscess. We would like to thank the Costello Medical team, Consultant Keval Haria, Global Health Patient Advocacy Healthcare Communications Maike Jager, and summer intern Lea Heinzer for their important work in this project.

"Working with the CGD Society throughout the past 3 months has been an unbelievably rewarding experience! Updating the medical materials has been an amazing opportunity for me to learn a lot about CGD and has also opened my eyes to the challenges as well as rewards that come with working in the field of rare diseases. It has been a pleasure working with Claire and Helen and I particularly valued that they were able to bridge the knowledge gap that exists between published research for CGD and personal experience and expertise. I am thankful to have been given this opportunity to support the CGD Society in a way that will hopefully also help the wider CGD community!" , Lea.

Immunology Study Day

Our CGD Clinical Nurse Specialist, Helen, coordinated an excellent Immunology Study Day for nurses in May 2023 at Great Ormond Street Hospital in London.

During the day, attendees heard the most incredible story from two amazing parents who are navigating severe combined immunodeficiency (SCID) journeys with their two boys. Talks were given on the latest advances in immunology care given by those working at the front line to improve lives of patients and families every day. There were also updates on newborn screening for severe combined immunodeficiency (SCID), a discussion on treatment developments and choices with immunoglobulins, thymus transplant and more. Our Chair of Trustees, Annabel, was also kindly invited to speak about quality of life in rare diseases.

07

What did we do this year?

Immunology and Allergy Nursing Conference

Claire, our Executive Director, represented the CGD Society at the Immunology and Allergy nurses group conference in Cardiff, Wales in May 2023. Our charity was one of the sponsors for this event which provided a great opportunity to raise awareness of CGD and the support services we provide to the CGD community and to nurses who are on the front-line of in-patient care. Claire attended the CGD Society stand, speaking to nurses about CGD, the charity and handed out our information booklets and leaflets.

CGD Study Day

In January 2024 medical professionals from around the world attended a CGD Education Day at Great Ormond Street Hospital (GOSH) London. The day provided an opportunity for key speakers to give presentations on a variety of CGD topics including gut disease and challenges of gene therapy for CGD.

Helen, GOSH's CGD Clinical Nurse Specialist whose role is fully funded by the CGD Society, led an insightful demonstration of the choices CGD patients face throughout their patient journey.

We were also moved by each of Alfie and Simon's talks about their personal experiences with bone marrow transplants and reflecting on what it is like living with CGD - thank you to both of them for coming along and speaking so candidly. Staff and trustees from the CGD Society had so many interesting discussions, making new connections and building anticipation for our new medical information booklets.

Thank you to Helen for organising such a good day; everybody learned a lot. We can now move forward with confidence that there is a brilliant community of dedicated healthcare professionals committed to working alongside us to achieve our aim of enabling families and individuals affected by CGD to live life to the full.

08

What did we do this year?

Online get-togethers

Our Virtual Get Together on Bone Marrow Transplant (BMT) took place in February 2024 Facilitated by Dr Robert Chiesa, Consultant in Bone Marrow Transplant and CAR-T Cell Therapy at Great Ormond Street Hospital London, this was an opportunity for families and individuals to hear the latest on BMT and have a discussion with Robert.

The event was open to families and individuals both in the UK and outside of the UK who may be considering this treatment option, who may have any questions and concerns, as well as those who have been/have a child who has been through the process and are able to offer support to others.

We were pleased to be joined by 14 families who benefited from speaking with Robert and hearing his presentation.

Rare Disease Day 2024

To mark this year's Rare Disease Day, our Executive Director Claire was invited to talk with the Rare Disease team at Costello Medical about CGD, the work of our charity, and the reality of living with a rare condition. As a patient advocate, Claire is passionate about raising awareness of CGD and the impact it has on the whole family.

The talk was well received by the team who were very engaged and were asking important questions to help with their understanding of the impact of CGD.

09

This year's highlights

Support

We increased our membership by 128 including individuals and families affected by CGD, medical professionals, and supporters.

Our email and telephone helpline fielded 41 requests for support and information.

Our family support fund supported 11 UK families with hardship payments and 17 individuals benefited from CGD Society-funded prepayment prescription certificates.

Helen supported

253

families in the UK and 36

patients outside the UK

Kian’s visit to Manchester United

We were delighted to have helped to make Kian’s dreams come true by securing tickets to a Manchester United football match. Kian’s brother, Noah, has CGD and Kian had one birthday wish this year: to watch Manchester United play a match at Old Trafford Stadium. Thanks to the generosity of the Manchester United Foundation, we were able to bring Kian’s wish to life at the end of May.

10

Our team

Niamh continued in her role of Community Fundraising and Marketing Officer from May 2022 forming strong relationships with our members and the wider CGD community.

Having been promoted the previous year, our Executive Director, Claire, continued to diversify her role helping to lead the delivery of this charity’s annual strategy.

Andrew Orchard, who resigned as a Trustee last year, continued to support us as a volunteer particularly in the development of the Beacon CRM system. Andrew is one of our founder trustees and over the last 30 years has dedicated his time and experience to the charity and the families we support. Andrew was also instrumental in the development of our annual fundraising campaign Jeans for Genes Day which after nearly 30 years still supports the rare genetic community through grants and awareness.

Governance

Annabel continued as Chair of Trustees throughout this year but sadly had to resign in April 2024 due to a medical emergency. We will miss her and wish her a speedy recovery.

Geoff continued as Governance Secretary with responsibility for ensuring compliance with all regulatory obligations.

Ning He remained as Honorary Treasurer with responsibility for financial management

Our annual strategy meeting was held in March 2024 where we defined priorities for the next financial year.

The Board numbered 5 trustees at the start of this financial year, but with 5 new recruits added and 1 resignation, the Board ended the year 9 trustees strong. At the time of writing, a further 5 recruits offset by 4 resignations, leaves the current Board with 10 trustees. We thank all current and past trustees for the donation of their time and expertise in the pursuit of our charitable objectives.

1110

Funding

Our subsidiary charity, Jeans for Genes Campaign, had a challenging year (details below) giving us a smaller than normal license fee for the use of our trademark of £6,000.

We were delighted to receive grants from various trusts and foundations this year which totaled £9,200.

We were also really delighted to receive a one-off donation of £50,000 from a corporate sponsor.

In what was a difficult year for fundraising due to the cost-of-living crisis we still raised £29,758 from donations and fundraising activities.

Communication

We sent 7 newsletters 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.

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Where did our income come from?

Jeans for Genes

In 2021, the CGD Society founded a subsidiary charity Jeans for Genes Campaign to take responsibility for the running of the annual Jeans for Genes fundraiser. The three staff were transferred from Genetic Disorders UK (now renamed Gene People) and the first campaign was delivered in September 2021. The CGD Society loaned its subsidiary £200,000 for working capital support.

Since its inception, Jeans for Genes has faced many challenges that have significantly reduced income compared to pre-covid levels; firstly, with Covid disruptions to schools and businesses and now, during this financial year, dealing with the cost-of-living crisis in the UK and the uncertain economic landscape.

Our subsidiary team successfully increased campaign participation and registration numbers compared to the previous year but observed a concerning decline in the value of average donations across all audience segments. Despite concerted efforts to stimulate activity and elevate donation levels, this trend, and the resulting budget shortfall, forced a comprehensive review of the viability of our subsidiary.

In December 2023, both charities engaged in scenario planning to navigate these challenges into the future. Our shared commitment to the Jeans for Genes campaign and its impact remained unwavering, and we were dedicated to exploring innovative but drastic strategies to surmount these obstacles.

As of 31st March 2024, our subsidiary remained a going concern, but all future scenarios involved considerable risk to the CGD Society who as the principal creditor had an outstanding loan balance of £100,000 in jeopardy. The repayment of this loan had already been postponed by 12 months to ease cashflow problems. After due consideration, this Board decided it was no longer able to provide support to the Jeans for Genes charity, and therefore our subsidiary had no option other than to cease trading and wind up.

These events played out after the year end but for the record, the charity ceased trading on May 23rd, 2024, after three staff members had been made redundant. The CGD Society agreed to write off £40,000 of the outstanding loan so that all of the net assets could be distributed to beneficiaries including a £30,000 grant round paid to 41 applicants. For this year, the trademark license fee paid to CGDS was calculated at 20% of the grant distribution, which at £6,000 was a significant reduction from the previous year (2023; £43,000).

The closure of our subsidiary is a bitter blow to our growth plans for this iconic 30-year-old fundraiser. Several of the CGDS trustees were intimately involved in two years of work before launch and three years thereafter to nurture the new entity. The staff inherited from GDUK did an excellent job but were the victim of unfortunate timing through the challenges of COVID-19 and beyond.

We thank those staff for their tireless, professional, and passionate delivery of three campaigns and we are so sorry that their employment had to end.

This charity will now oversee the delivery of the Jeans for Genes campaign from here on and will ensure its continued success.

13

Community Fundraising

Our team worked hard to raise a total of £29,758 which exceeded the budget of £26,000 in what was a difficult year for fundraising for many charities as the country faced a costof-living crisis. Our Community Fundraising and Marketing Officer, Niamh, continued to build relationships with the CGD community and donors including representing the charity at 2 fundraising events to help improve our profile. Niamh and our Executive Director Claire worked together to produce the charity’s Community Fundraising Strategy, which helped identify ways to diversify our fundraising within the constraints of the charity’s limited resources. Part of the strategy was to run campaigns through our new CRM system including a successful Christmas campaign with our CGD Society Virtual Giving Christmas Tree, which raised a total of £590.

Institutional Fundraising

We continued to work with Almond Tree Strategic Consulting as part of our ‘growth project’ to help increase income through trusts and foundations. This year secured £9,200 in grants from various sources. Despite initial success in our first year of working with Almond Tree (2022-2023 £21,000) this year proved to be particularly difficult to secure further funding and increase our income. With factors such as the cost-of-living crisis and the after effects of COVID-19, we were not reaching our budget. This was regularly reviewed by the Board and a decision was made in January 2024 to end our contract with Almond Tree with a plan to bring this process in-house.

We would like to say a huge thank you to the following trusts and foundations for their support this year:

· Douglas Arter Foundation

· D’Oyly Carte Charitable Trust

· The Micheal and Anna Wix Charitable Trust

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Membership fundraising stories

Our members have been busy smashing challenges and hosting events to raise funds for the CGD Society this year.

Sophie and Simon’s Chicago marathon

Dedicating this "once in a lifetime experience" to their nephew Ben who began his Bone Marrow Transplant (BMT) treatment for CGD the week before. They used the challenge to raise an incredible £5,618 and even secured matched funding from Sophie's employer.

“Whatever this marathon throws at us, it will pale in comparison to the challenges being faced head-on by Ben in this week. If we can carry with us just an ounce of his resilience or a glimmer of his cheeky smile, 26.2 miles will fly by. And when times do get a little tough we'll try to listen to some advice from Ben himself and just 'stay in the moment' and enjoy it - knowing that we are supporting an amazing cause.”

– Sophie

We hope they feel proud of their hard work, it will make such a difference to the CGD Society and the CGD community we support.

Bob’s BMT Journey

Bonnie Burgess–Biggerstaff shared her family's CGD journey as her son Bobby underwent a bone marrow transplant (BMT) for CGD in January 2024. Bonnie also set up a JustGiving page as a way for friends and family to donate in recognition of the care and support we provided the whole family through Bobby’s BMT journey. In total, the family raised £6,000.

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Membership fundraising stories

Hogsback Chapter

We want to give a thank you to Hogsback Chapter - HOG - Surrey UK for their dedicated support over 2023 as one of their three Charities of the Year.

By running events for their own and other Chapters' members to fundraise throughout the year, they all together raised an incredible total of £3,000 for the CGD Society. These funds will make a real impact on our small charity's vital support for the CGD community.

Niamh was delighted to get to thank the Chapter in person in December as well as meet their two other brilliant Charities of the Year, Hounds for Heroes and KSS Air Ambulance, and even try some of their impressive Harley-Davidson motorcycles - no doubt with the engines off!

Chatham Town FC

We want to say a massive thank you to Chatham Town FC for their special day back in May 2023 to remember little Freddy Leitch who sadly passed away at 8 years old from complications of CGD. They released balloons in memory, played a special football match featuring Freddy's favourite superheroes, as well as raising an incredible £3341 for the CGD Society.

We really appreciate the support they have enabled our charity to give to the CGD community through their fundraising, but most importantly the heartfelt send-off they gave to little Freddy.

We want to say a big thank you to each and every one of our fundraisers this year. Your support is truly appreciated and will make a difference to those affected by CGD.

“We wanted to celebrate Freddy’s life with this special day, while raising money for Demelza Hospice and the CGD Society, who have supported Freddy and his family throughout the last few years." - Chatham Town FC

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Expenditure, investments and reserves

Expenditure

Our total spend for the year was £200,739, of which the largest proportion (43%) was spent on direct support for those living with CGD: £86,970 (2023: 72,673, 42%). This money 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 £28,522, or 14% of total expenditure (2023: £33,905, 20%).

We continued to partially fund the project to provide mental health support to the Birmingham Hospitals Trust, through a contribution of £5,000 for the third year. This research expenditure amounted to 2% of our total spend (2023: £5,000, 3%).

Our remaining expenditure consists of £2,500 / 1% on essential governance costs (2023: £7,086, 4%), and £37,777 / 19% on raising funds (2023: £52,494, 31%). We’re pleased that fundraising and governance costs as a percentage of total costs have decreased this year, as we strive to make the most efficient and impactful use of all money donated to the Charity. As we look forward to the next year, we recognise that we will need to continue to invest in our fundraising activities, so we can continue to provide services to our members, but we aim to keep this percentage as low as we can.

In addition to this, other expenditure of £39,970 (2023: nil) represents a balance written-off from the capital loan to the Jeans for Genes Campaign, a subsidiary charity of the CGD Society, to support the winding down of that charity. This is a one-off item.

Overall, the net movement of funds was a deficit of £82,550 (2023: deficit of £84,480). The ever-present effects of the Covid pandemic and the cost-of-living crisis has put strains on the fundraising environment, particularly for smaller charities like ours. However, we are undeterred and dedicated to delivering our key services to our members, whilst looking forward to key fundraising opportunities in the coming year.

Investment policy and performance

The charity has longer-term financial reserves invested in a medium risk portfolio and managed by Evelyn Partners. Over the year to March 2024, interest rates have remained at high levels whilst the central banks attempted to control wider economic inflation caused by the cost-of-living crisis and conflicts sparking around the world. Our investments portfolio exhibited a gain of £10,729 during the year (2023: loss of £6,320).

As of 31 March 2024, the portfolio value stood at £164,850 (2023: £150,268)

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Expenditure, investments and reserves

Reserves policy

The charity has a reserves policy that is used to judge the adequacy of financial assets for the coming year. The policy is reviewed annually and was updated in September 2024. It states that the charity must retain free reserves to cover 6–12 months of budgeted running costs for the year ahead, i.e. £43,000–£86,000 based on the core expenditure budget of £86,000 adopted by the Trustees.

As of 31 March 2024, the CGD Society has total reserves of £289,616, comprised of:

Therefore, the CGD Society has closing free reserves of £68,865 (2023: £116,774) which meets the reserves policy target and equates to approximately 10 months of planned expenditure for the year ahead.

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What do we plan to do next year?

As reported above, Annabel our Chair, resigned at the end of May to focus on an urgent medical issue. Her drive and ambition for this charity, alongside her efficient management style will be sadly missed. Nonetheless our goals remain unchanged and undimmed as we describe below:

Fundraising

The fundraising climate remains difficult and uncertain so our goal to diversify income sources is arguably even more critical than in 2021 when we launched the Growth Project. Our financial statements show a substantial deficit this year and the budget for 2024-25 is similar. This is clearly unsustainable so we will attack this priority problem on 4 fronts:

Community Fundraising

Niamh has done an excellent job of fostering relationships within the community and outside that have generated income in excess of the budget expectation. Unfortunately, she resigned in June to take up a new opportunity leaving Claire in sole charge again. Hence, the first objective will be to recruit a new Fundraising and Marketing Officer as soon as possible to execute the agreed strategy. We will miss Niamh and wish her well in her new role but hope that a new recruit can be found quickly to maintain last year’s progress. The budget income for community fundraising next year is £35,000.

Grants from Charitable Trusts and Institutions

The challenge of securing grants has been emphasised by this year’s poor results whilst outsourcing and working with a fundraising consultant. This experience combined with specialist advice from colleagues generated many potential grant sources, but application success rates were disappointing. Generally, the grantors reported that their funds had been diminished by COVID-19 support grants, so less was available for new applicants.

For the year ahead, this activity will be brought in-house. Claire, using her new knowledge gleaned from working with a consultant, will seek repeat funding from known supporters, renew applications that previously failed, and seek new leads from other sources. To help her to allocate her limited time to this crucial work, the Board has agreed that she will dedicate one day per week to grant applications. The budget income from grants next year is £20,000.

Sponsorship

This new income stream will become the focus of the new Fundraising and Marketing Officer. By developing a marketing strategy to engage with corporate organisations we hope to achieve our modest target of £9,000.

Jeans for Genes

Our plans for this iconic fundraiser have obviously been disrupted by the ongoing closure of our subsidiary charity Jeans for Genes Campaign. When this Board withdrew financial support in February 2024 it accepted that a 12m hiatus would be necessary to regroup and rethink the campaign delivery. However, since the start of the new financial year, we have accepted an offer from a major supplier to run a diluted 2024 campaign using collateral from the previous year.

19

What do we plan to do next year? Cont.

The late start without any new creative materials will impact results but the low expected cost could result in a greater proportion of income for distribution, nonetheless. This stopgap measure will give trustees the time to conceive a new 2025 campaign whilst keeping the brand warm and the community engaged. Nonetheless, there is no budgeted income from Jeans for Genes next year due to the uncertainties therein.

Support for the CGD Community

As always, our first priority is to provide comprehensive support to our membership. Our Clinical Nurse Specialist and our other support services will continue to be the backbone of that support.

In addition to ensuring the continued operation of these services, we will focus on improving the support we offer. Following on from the success of our online get-togethers event (see What did we do this year?), we will look to run more frequent online events on the topics of greatest importance to our membership.

We remain committed to supporting the mental health and improving the Quality of Life of our members but made limited progress in developing our support in this area in the current year. We will apply for funding to offer online mental health workshops facilitated by the charity RareMinds. These workshops will provide mental health support in such areas as ‘living with uncertainty’ and ‘coping with a diagnosis’.

We will draw on the expertise and support of our Medical Panel and use online platforms to enable a reach across our international community. We will continue to monitor feedback from our members to help determine further updates to the format and content of our patient events.

Knowledge and thought leadership

The board of trustees and the Executive Director will hold a mid-year face-to-face meeting to review the strategic plan for 2023-2024, that will help us note which activities are behind the planned delivery and crucially what our priorities should be for the year ahead. The key deliverables are summarised below:

20

What do we plan to do next year?

Research

We were disappointed to learn that the clinical psychology service at University Hospitals Birmingham NHS Foundations Trust that we part funded over 3 years was withdrawn unilaterally by the Mental Health Trust after 14 months of excellent service. However, it was reported that in those 14 months the service, that aside from the clinical benefit to the users, was also able to provide training to nursing and medical staff. The trusts final report has helped towards a business case being developed to provide a substantive service in the future.

It is with this news in mind that mental health support for the CGD community is one of the key priority actions for our strategy this year.

Organisation

The unexpected resignation of our Chair and three other trustees at the start of the new year will delay ongoing plans to build a more sustainable organisation. The subsequent recruitment drive to replenish the Board started immediately and has been extremely successful to date. These new volunteers bring new skills and energy that will precipitate a change in organisation structure through the sub committees and delegated authorities therein.

Also, a new Chair will be appointed who will lead this reorganisation, along with a new Treasurer and Secretary who will replace Ning He and Geoffrey Creamer respectively who have given notice to retire at the October AGM.

It is anticipated that the organisation will be back to full strength by the second half of the coming year.

21

2023-24 Summary

In common with many charities, the CGD Society is facing significant financial headwinds which we must address in order to secure a sustainable future for the community services that we deliver. The depletion of Institutional funds through the COVID-19 pandemic, followed by the cost of living crisis makes our Growth Project plans to diversify into grant funding even more challenging. Paradoxically, our services are more vital than ever as the reliance on 3rd sector and charitable organisations becomes ever more necessary as the NHS continues to recover post-pandemic.

Nonetheless, our community have once again beaten expectations and raised almost £30,000 through their fundraising events which is extraordinary for such a small cohort. Also, we are so grateful for a substantial sponsorship from the international employer of a member who benefitted from our advice during their CGD journey. Without this, our financial pain would have been much worse.

Our iconic national fundraiser, Jeans for Genes, has had a bumpy journey through the pandemic that sadly culminated in the closure of our subsidiary charity this year. However, this does give us the opportunity to rethink the delivery model to reduce costs but still maintain an income stream for ourselves as trade mark owner. Crucially, we will continue to award grants to other small and micro charities in the genetic disorder sector, who are facing the same financial pressures as ourselves. Exciting plans are under discussion so we are hopeful that in 2025 we can change the trajectory and restore growth to this iconic event in its 30th year.

Our community continues to grow with 128 new members this year and over 1600 in total across an extraordinary 81 countries. We continue to provide the information that our members need with updates and newsletters to maintain currency.

Our successful online meetings will continue to explore hot topics with expert advice. Our specialist nurse Helen has once again excelled as the clinical hub of this charity, backed up by the medical panel whilst Claire and Helen have raised our profile through several external events.

On behalf of the Board, I thank all of our supporters, volunteers, expert advisors, and staff for their expertise, time, and passion for our cause. We can certainly be proud of the services that we deliver and the growing cohort that we support. We offer unique advice to the world that no doubt changes lives for the better.

This report was approved by the trustees on 21/11/2024 and signed on their behalf by:

………………………… Dr Geoffrey Creamer Secretary

22

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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.

23

REGISTERED COMPANY NUMBER,, 07607593 (EnKlxnd gnd IV8le5) REGISTEIIED CHARITY NUMBER.. 1143049 THE CHRONIC GRAN1ILO￿lATOUs DISORDER SOCIE'TY UiiAudlt¢d FliiRn¢lHI S141em¢iits for Ilie Y¢ii' Ende(131 MqJTh 2024 XeiiiRdiii Loiidon LiiMi¢ed Nighiingalc HOUSE 46-48 Efist Stfe¢i Epsojii Siin¢y KT17 IHQ

THE CHRONIC GRANULOMATOUS DISORDER SOCIETY CoDteDts of tILe FIDgn¢l41 Stal¢Jnents for the year end￿ 31 M4r¢h 2024 PA8¢ R¢port of the Tru$tee8 Independent Examlner's Report Stal¢m¢rtt of FlnAtt¢lil A¢tlvlt1¢5 BalAD¢e Sheet Notes to the Flnaftelal Slatementi 6 to 12

THE CHRof4ic c.RANULOMATOUS DISORDER SOCIETY (REGISTERED NUIllBER: 07607593) Repoi't of the Triistees for th¢ year ¢nd¢d 31 March 2024 Tlie Irusiees ivlio are also directors oftli¢ charity for Ilie PLirwe$ of ihe Comp8ni¢s Act 2006, PT¢sent their report wÈih Ihe fin&ncial siatements of the chariry for the year ended 31 Ma￿h 2024. The inisiees have Adopted the provisi0118 of Acwiinting and Reportlng by Chorili¢s'. Stal¢m¢nl of R¢winniended Praclice appli¢abl¢ lo ¢hHrili¢s p￿pan17B ilieir ¢coiInts in accordaii¢e ivitli the FiiMn¢ial R¢pwrtin8 Stsndard appli¢abl¢ in th¢ UK and R¢publi¢ of Ir¢lond IFRS 102) {effeclive l Januory 2019). STRucfuRE, C.OVERNANCE AND MANAGEMENT Goveimiiig do¢iiinerit Th¢ ¢h8Tity 1$ wnlroll¢d by its gov¢min8 dociim¢nt, a memorandum of association. and conslitul¢s a lin)ited eoIiipany. liiiiited by guarartiee. as defiiied by Ihe Conipanies Act 2006. REFfiRF.fCE AND ADNIINI$TRATIVE DETAILS Regi51¢r¢d C.oinpANy niimbei. 07607593 IEngland And Ivales) Rezlgl¢r¢il L'h81'1ty lliinilJ¢Y 1143049 R¢gi51ere¢l offi¢¢ Ni8hlin8Rlc 14oiise 46.48 1.-asl Slreel Epsoni Surrey KT17 IHQ Ti'iistoei Dr CJ D Crear)i¢r MrNHe MrCLai Dr A Griffiilis (reii8ii¢d 23.4.24} Mr K S Sl?alii {r¢5igncd 19.8.23) Mr A fl K¢ffl¢r lapJx)intcd 12.9.23) Mr IV Kiteheiier llppoiiiied 24.10.23) Mr J D Slcv¢iis lapw)intcd 7.6.24) Mr K PcToillpHlidH5 Inppoinl¢d 2.8.24) M$ R S Dijeng Iiiipiiiied 2.8.241 Ms C L Ivilliams lapp)inl¢d 2.8.24} Mr L Ilyrnc lappoijiled 2.8.241 Dr F Diobiiiei¥ski (appoiiited 16.9.23) (resi8iied 4.5.24) Mr C Hvl¢hiiig5 IAppK)illted 24.10.23) Ir¢5i8ncd 24.4,24) Mr M Niles {APPOiiited 24.10,231 Iresi8ned 24.4.24) Iiid¢pendeiif Kx4mln¢r Niglilin8ale House 46-48 E&sl Sir¢¢t Epsom Surtey KT17 IHQ 25.10,2024 Approved by order of the board of truses oth................ - and si8ned 011 irs behalf by: É& N H¢- Tn551¢e Page I

Indepenllent Exhmiiier'5 Repoi't lo the Trusleos of The Clironlc GrAiiiilomAtou& Disorder Soclely (R¢gi51ere(I niimber: 07607593) Independ¢nt ex#inlntr'5 repoil to ihe li'us1ee5 ofThe Chmnlc GranulomatOU5 DlsoRxter So¢i¢ty ('the Comi)Nny') I report lo the charity Iruslees 01) n)y examiiiiiion of the ac¢ounls ofthe CompAny for the year ended 31 March 2024. RespoJi$ibilitre5 aiid ba515 Df i'eport As the charity's triistees of the Conipaiiy (atld also its dirrclors for Ihe purpis¢s of wmpany laiv) you are resp)nsible for the preparalioii ofthe keeoiiiiis lil R¢cordanc¢ iviih Ilie requiremenis of tlie c.￿￿paI7iCS Act 20061'ih¢ 2006 A¢t'}. Having Satisfied myself that the ofilie Company ar¢ Th)t reqiiired lo be fiiidit¢d iind¢r Part 16 of ihe 2006 Act and are eligible for indepeiidenl examination. I reporl in respect of my examination of your chaTily's accoiinls as eafri¢d ovl und¢r S￿lI0n 145 of ¢h¢ ¢.hariiies Act 2011 I'ihc 2011 Acl'l. In earryin8 oyl my examinAiion I have followed Ihe Direclions giveii by tlie Chnrity Coinihi$5ion vnd¢T Scclioii 14513) Ib) of Ihe 2011 Aci. Inllependeiit exfflmlnePs 5tAtemeiit I Ii&v¢ wiiipleled i￿Y exAmiiialion. I collfinii dihl rio matters haye coi)Je to Iny otteiiiioii lil eonne¢tion wlih Ihe eximinati¢)n livin8 ni¢ cause to beli¢Ye: ac¢oiititiDg iewrds %vere not kept irh respect of tli¢ Company as required by Section 386 of the 2006 A￿. or the accuiinls do not Dccurd Iviih those rewrds. or the nc¢ounl8 do 1101 comply iviih Ihe accoiinling requlremenls of Section 396 of ihe 2006 Aet other tliin Hny r¢quiTenient thal th¢ accounts give & true and fpir vi¢w ivhi¢h 1$ not a matter considered As pfirt of an i1￿epend¢1lt eXA1￿l￿all0ll- tsr Ih¢ a¢¢ouiils Iiave I￿1 been prepAred in thtcordan¢¢ iviih Ili¢ Jndhods ond prii)ciples of ihe Siftlem¢nl of Rrtoiiiiiieiidcd Pra¢ti¢c frjr Ac¢oiiiilin8 and ￿porting by charities {api)liellbl¢ io cliarilies preparing Ilieir counts in accordan¢t wilh Ilie Fiiiaiicial Rerx)rtin8 Si8iidard 8iiplic8ble iii Ihe UK and Republrc of Irelartd IFRS 102)). I hAV¢ ilo ¢on¢¢rns Hiid hav¢ come across 110 011)er mAi*rs in connection iviili th¢ exainiiiaiion lo which Riienlioii sliould be dyaivn in this report iii order to ¢nabl¢ a prop¢r vnd¢r31widing of the accoiints to be reiched. pl Hazel DAY Bsc DCIIA FCA Xeiiittdin London Limilcd Nigliiingale House 46.48 L4111 Sireet Epsoin Siirr¢y KT17 IHQ Dale.. Page 2

THE CHRONIC GRANULOMATOUS DISORDER sOc￿Ty Slaternent of Flnan¢lAI Aetlvlrfes roT lh¢ y￿r ¢néed 31 March 2024 2024 Total 2023 Totsl Unrestri¢ted ds R¢ytri¢*d Notes INCOME AND LNDOWMENTS FROM Donationg aThJ lewi¢g 87272 5,7 92,972 43,898 Jnvestsllent iti¢on 13,844 13,844 644 6.1￿) 43,(M)O 101.760 5,7( 107,460 92,998 KXPP.NDITifRE ON Rgising fvnds 37.777 37,777 52,494 Charllable actlvltles R¢lief FAlii¢#lion Medi¢al Research 72,019 28.522 5.000 2,500 14,951 86,970 28,522 72.673 33.905 2,5(K) 7.086 Other 39,970 39.970 Totsl 185.788 14.951 21M),739 171,158 Nei 8ttins1(lotsu) on inveitmenll 10,729 10.729 (6,320) IYET INCOMEI(EXPENDITURE) (73,299) (9,251) {82.5501 (84,480) RECONCJI,IATION OF FUNDS Tolal fund8 brou8ht forward 357.116 15.050 372,166 456,646 TOTAL FUNDS CARRIKD FORWARD 283.817 5.799 289,616 372,166 The llotes fomi pArt of these fiTwn¢ig1 slatNnenls Page 3

THE CIIRONtC CRAIYULOMATOUS DISORDER SOCIETY IREGISTERED NUMBER: D7607593) Bolance 8heet 31 Mar¢b 2024 2024 Tothl 2023 Totsl Unrestricted Restri¢d fi￿d5 Noles FIXED ASSETS Inyestsnents 164.850 164,850 150,269 CURRENT ASSETS Deb￿r Cash at 10 00.133 79.200 60,133 84.999 126,569 110,651 5,799 139,333 5.79 145.132 2J7220 CREDm)RS Amoullls fallittg thi¢ within onv year (20366) (20.366) (15,323) NET CURRENT Assrrs I IN.967 5,799 124.766 221,897 TOTAL ASSETS LESS CURRENT LLIBILITIES 283,817 5.799 289.616 372,166 NET ASSETS 283,817 5,799 289,616 372,166 FUNDS Unreslricte<l ffijnds R&tri¢led 12 283.817 5,799 357,116 15,050 TOTAL FUNDS 289.616 372,166 Th¢ charitsbl¢ company is enliiled to ex¢ni￿10￿ from oudil widv SKllon 477 of ihe Companies Act 2(K16 ror the year end¢d 31 March 2024. The members Iiave not Tequired th¢ company to obtain an audii of its financial thl¢rnents for the year ended 31 March 2024 in accordattce with S¢elion 476 of the Comp8ni¢5 Act 2006. The tfU5te&q acknowledgc thcirresponsibilitie% for (a) ensurkng that the charblabl¢ coMp8￿Y kttps aceounlin8 record8 thut comply with Sections 386 and 387 of tbe Comparties Aei 2￿6 Jnd Ib) prepRriiig finw)Lial ylttlementj which 8iYe a itu¢ and f#ir view of the L4tste of •ffair8 of the charitable cornpany as at ihe end of each financial year and of 118 surplus or deficit for uch fman¢ial yC8T in accordance with the Tequir¢ments of Seetiotss 394 and 395 and which ￿h￿viS¢ wmply witli the requ1￿ments of th¢ Con)prn A¢t 2006 relating to finan¢ial 51atem¢nls, so faras applicable lo the eharilablc company. The notes fomi part of these fin•n¢io1 st¥t¢m¢nts continued...

THE CIIROYIC CRANULOMATOUS DISORDER soctETY (REGJSTERED NU￿[BER. 07607593) B•lanco She¢t- contlnued 31 March 2024 The5¢ fin&ncial Bts*ments have been prypored in Ac¢ordw]u with th¢ PTQViSion$ 4pplic8blc to ch&rithble compani¢3 Bubj¢¢l ￿ Ihe sinall ￿MpanIeS regime. The fin8n¢i•l stst¢mont8 were approved by the Board of Th181ees and authorised for issue .25..1Q.2o24..,,..,,,...,....,,,., alld wew signcd on its b¢half by: on N He- Trust¢¢ The nok6 fom] W of these fina￿181 slalements Pag¢ 5

THE CHRONIC GRANULOMATOUS DISORDER SOc￿Ty Notes t￿ ¢hc TrNn•nclsl Slotemenls for tbe ye8r eoded 31 M#r¢h 2024 ACCOUNTING POLICIES BASIS OF PRF.PARtNG THE FJNANCIAI. STATFMF,NTS Th¢ finaDcial 8tstements of th¢ ¢h8ritabl¢ company. which is a public bEnefit entity under FRS 102. have b¢¢n prephred in accordaTKe wilh t]ie Ch￿itieS SORP IbRS 102) 'AeeountiThg and RepDrlin8 by Charities.. Stateillent of Recommended Pracltcc applicable to chariti¢5 preparing their accounts in ac¢or(lan¢e with the Financiil Re￿)rtIng Stalldard *ppli¢abl¢ ID the UK atld R¢publi¢ of IrtlllNd (FRS 102) (effcclive l January 2019y, FiDatsci81 Repcbrting Standard 102 The Fitsanci81 R¢p)diug Stsndard applicgble in the UK 8Dd Republic of [r¢I￿d, Ind th¢ Compani¢5 Ac¢ 2006. The finan¢ial stakm¢nL5 hav¢ be¢n pr¢pAred wid¢r th¢ hisiori¢al ¢ conveniion, with tbe exceplioll of investments which ineluded al mmrket value, ag modified by the lu4¢ion of ¢¢rfalna8%18. INCOME All incom¢ 13 rewgnised in thc Sthiem¢nl of Flnanci41 Adiviil¢s once the charity h&y entltl¢men¢ ￿ the fijndg, 11 is p￿babIe Ib&l ibo iticome will be rtteived aod the amount eon be nieasured reliably. EXPENDITURE Liabililiu are ttco8nised os expeJ]dilure as soon as thern li a le8al or CODstructive obli8&tion con￿1￿1￿8 the charity lo that 6xpcnditur¢, it is PTobabl¢ ihal a tran8f¢r of ￿OnoMiC bencflls will bc r¢qu￿￿ in 5¢Nlcm¢n¢ the omouDt of the obligation can be me4sured reliably. Expendituro is accounted for on accnJ81s basis and has been classified under h¢adinBs tb81 oggrtg3te oll cost r¢l8id ¢0 th¢ category. Wh¢r¢ costs connoi b¢ directly

ttrlbut¢d ¢0 p)rti¢ulgr h¢ading8 ih¢y h*vo be¢n 8lio¢&i¢d ti) a¢¢ivili￿ on 8 b¥is ¢OMiBlenl with th¢ use of

resources. TAXATION The charity 18 axempi from corpornlion lax Oll ils choTitsbl¢ a¢liviti¢8. FUND ACCOUF4TING UnK5tri¢t¢d fvnds can b¢ u8ed in a¢¢ordaD¢¢ With the cbart4bl¢ obj¢¢iivu It th¢ di$¢r¢tlort of th¢ tsu81¢¢8. Restricted fimdg can only bc used fnr particular r¢stri¢lcd PUTPOS¢S Within Ihc object3 of tho charity. Re3tr5¢1ion i$e when speelfi¢d by Ihe donor orwhen thnds are rnised forparti¢ularrestrteled p￿ry￿seS. Furlh¢T ¢xplanNlion of ihe n&tur¢ ond purposv or¢￿h Djnd 18 inoludcd in th¢ notu to th¢ fthpn¢io18tot¢ments, DONATIOIYS AND LEGACIES 2024 2023 Don&lions GIA aid OranlJ 82,607 1,165 9.200 22,898 21,0 92.9n 43.898 P88¢ 6 ¢ontinue<L..

THE CHROIYIC GRANULOMATOUS DISORDER SOCIETY Nole$ to the FSn8n¢lil St#t¢m¢nts- ¢ondllued for tbe ye•r ¢nded 31 MAr¢h 2(124 DQNATIONS AND LEGACIES- colltlDued Grants receiv4 included in thE knvc, are follows: 2024 2023 Dou8las Arter Foundalion National Lottcry Awhrds for All Childwick Tw51 The Hospit&l Saturday Fund The D'oyly Carte Chwilable Th￿t The Mar8b Charitoblc Th￿t The MichAel 8nd Ann& Wix ChArilable Try￿t Loui8 Niculots Rcsiduary Charitublc TNst 500 10,000 5,000 2,000 J,500 500 9,200 21.000 INVESTMENT INCOME 2024 2023 Other tlxed a88ei Invey¢- FJI Loan interest received InÉ¢re8l 4,141 9,688 15 6.1 13.844 6,11)0 RAlStNG FUM)S RAISING DONATIONS AND LECACIES 2024 2023 Direet aAd xupport eo 37,473 50.935 INVF.STMF.NT MANAGEMENTCOSTS 2024 2023 Portfollo m8ttagtmcnt 304 .5S9 Aw¢8ftt¢ amounlB 37,777 52,494 PA8e 7 continued...

ThE CHRONIC GRANVLOMATOUS DISORDER soct&TY Notu to tbt Fln8n¢lal St2temellt8- eonllllued ror IheyeAr tnded 31 March 2024 CHARITABLE Acf]VlTIES cO￿s Supt ¢osts ($¢¢ note 6) Dir¢¢i Costs Totals Rell¢r Educ&lioD Medical K¢5¢arch Govcmance 64.705 10.326 22.265 18,196 86,970 28,522 5,0 2,5(KJ 2,500 82,531 40.461 122,992 SUPPORT COSTS Mina8¢m#n¢ Reller Eduutlon 22.265 18,196 40,461 TRUSTEES, REMUNERATION AND BENF.FITS There wete ￿ In￿1¢¢$, remulleration or other ben¢llts (or th¢ yw ettd¢d 31 M￿￿ 2024 for the yetr ¢nd¢d 31 M￿Ch 2023. TRUSTEES, EXPENSES Th¢r¢ weT¢ tThsltt8' expenst4 p¥id for the year ¢lld￿ 31 Mtr¢h 2¢Y24 totsllitig £466 (2023 £663) ￿ 6 (2023 2) COMPARATIVES FOR THE STATEMEwf OF FINANCiAL ACTIVITIES 2022.23 Unr¢stTtthd Restricted funds funds Total nds INCOME AND ENDOWMENI3 FROM Donation8 And l¢g8¢1¢3 26.898 17,OtKI 43,898 Jnwtm?nt it￿rne Othcr income 6.100 43.000 6,100 43,000 TtstAI 75.998 17.1110 92,998 EXPEIYDITURE ON R8i8ing fvnd8 52.494 52.494 CharltAble ActlYltieJ Relicf F.ducatio Medical Research GovcrDanr 61.472 33.905 5.000 7,086 11,201 72.673 33,905 7,086 T(ty1o1 159,957 11.201 171,158 Nef 8ain&Oosses) on investsnents (&320) {6,320) Pagc 8 continued...

TIIE CHRONIC CRANULOMATOUS DISORDER sOc￿Ty Nolu lo tkn¢ FlThfinclal Statements- condllu¢d for the yeAr ended 31 Miyeh 2024 COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES 21122.23- ¢ontlnued Unrestricted Restricted funds TotAI funds NET ￿COm￿(EXPENDlTURE> (90.279) 5,799 (84,480) RECONCILIATION OF FUNDS TOMI fimd8 brought forward 447,395 9,251 456,646 TOTAL FUNDS CARRIED FORWARD 357,116 15.050 372.166 FIXED ASSET INVESTMENTS Lisled invuttnertts UDli8ted invutmen Totsla MARKF,T VAI,UE Ai l April 2023 Additions Di8p05o16 R¢v8liiDlionJ 150,268 4,156 (3041 10,729 150,269 4,156 1304) 10,729 Ai 31 M8r¢h 2tr24 164J49 164,850 NET HOOK VAI,UE At 31 MaKh 2024 164.849 164,850 At JI March 2023 150.268 50.269 There w¢re no inve8kn¢nt 0s9¢ts oulsid¢ th¢ UK. io. DKBTORS.. AMOUNTS FALLINC. DUK WITRIIN ONK YKAR 2024 2023 Other d¢bl VAT Prepa￿nents and a¢￿￿ed incorne 60,IJ3 100,123 1,138 25,308 60.133 126.569 PleH5e r¢f¢r ￿ Nole 13 for more Infon￿lIOtt re8arditi8 the Oth¢rd¢btor bAldn¢¢. Page 9 con¢inued...

THE CHRONIC CRANULOMATOUS DISORDER sOc￿Ty Notes to the Flnanelal StAtenieDts- condDued for (he year ended 31 March 2024 CREDITORS: AMOUNTS FALLING DUE ￿TH1Th ONE YKAR 2024 2023 Tr￿¢ creditOTS Social ue¢urity ond oth¢r thxes VAT OthercTeditry8 ACCTh￿18 snd defetred income 15,738 951 12,544 (73) 1,352 1,500 1625 20.366 15.323 12. MOVEMENT IN FUNDS Net movement in fijnds Al 31.3.24 Al 1.4,23 Unrestrlcted fund8 General fw Jcans for O¢n¢s $uppirt Nur8in8 fund 116.774 100,000 140,342 (47.909) (39,970) 14,580 68,865 60,030 154,922 357.116 (73.299) 283,817 Re5trlcted fuDds Family Supporf Orcbard Th¢rapeutiG8 (Ffimily Sup￿) 0￿hard Th¢rnpcu¢i¢s (N¢w¥1d￿r JkM)nsorship) National Lottery Aw•rd$ for All 158 (158) {J.000) 1.892 10,000 (1,892) (4.201) 5,799 13,050 (9,251) 5,799 TOTAL FUNDS 372,166 (82.550) 289,616 Nel movemenl bri inclu¢l¢d in th¢ obov¢ Arn ag follo￿. Incomlng tesourcc8 QAIM and 105$ Movemenl in fund$ expended UDr¢Jtrlcl¢d fynd5 Gemernl thnd J¢aDS for Gcn¢s Bupporl Nutsing 97.￿5 (145,514) (39,970) (304) (47,909) (39,970) 14,580 4,155 10,729 101,760 (185.788) 10.729 173.299) Restrleled funds Family Support OKhard Th¢tBpcutics (F8mily Support) Or¢h8rd Th¢r8p¢utics (N¢wsl¢tt¢r $POTwJrnhip) Na¢ional LA)rt￿ Awards forAII 5,700 (5.858) (3.000) (158) 13.000) (1.892) (4,201) (1,892) (4.201) 5,7cK) (14,951) (9.251) TOTAL FUNDS 107,460 {2CKI,739} 10.729 (82.550) Page 10 continued...

THE CHRONIC GRANULOMATOUS DISORDER sOc￿Ty Note5 to the Fln8n¢lg1 StsteDieDts- cond4ued for the y¢ar ¢nd¢d 31 M•T¢h 2024 12. MOVEMENT IN FiJNDS. ¢ontlnu¢d ComporAtive8 for movement In funds Net mov¢m¢nt in fi￿d$ Trgnsfm belweon At 31.3.23 At 1.4.22 Unrulrleltd fvndi G¢neral fund Jeans forG¢rKs sUp￿rt Nurning fund 189,247 loo,￿0 158,148 (82.4LYJ) 9.927 116,774 100,(x)o 140,342 (7.879) (9.927) 447,395 (90379) 357.116 R¢trleted funds Fainily 8upp)rt Orrhtrd lli¢rnp¢uii¢$ (Family Support) OrCh￿d Thernpcutics (N¢w8lett¢r sponsorship) NBti¢mAI Lottery Awud& forAII 4.359 (4201) 158 3,0(XJ 1,892 .892 10,000 10.000 9.251 5.799 15,050 TOTAL FUNDS 456,646 (84,480) 372.166 Comparndve net movement I1￿￿￿$, included in th¥ above aTe as follows: IncL)ming Re81)UTce8 ¢xpended Gllins and losscs Mov¢ttt¢DI in funds Unreilrlcted fundi General fwid NurninB fund 75,998 (158,398) (1.559) (82,4(X)) (7,879) 1&320) 75,998 (159.957) {6.320) (90.279) Rutrlcled fundi amily Support Nalion#l U)Itery Awardi for All Childwick Thjst Th¢ Ho$pilal Saltsrd8y Fwid (4,201) (4.201) 10.000 10.( (5.000) (2,000) 17,th)0 (11,201) 5.799 TOTAL FUNDS 92.998 (171,158) (6.J20) {84.480) A d¢seriplion of th pu4)ose of the fjJnd3 is as below.. Deli￿lIed fvnds: Jeants for Gene8 8UPPOrt - A copital lo￿ rnado in 2021 to th¢ J¢aw for Genes Campai8n charity to &55i8t with working capif#l in the settip slA8eA of the charity. Subsequent to the year end an agT¢¢inent wa8 made with the clwity ￿ write off part of ¢he b8181￿ owed (sw no L3) teavill8 £60.(N)O payablc in the 2024125 fillallcial N￿￿Ing fill￿- Funds set •sid¢ to cover di¢ Nur8ing 5crvic¢ provision forthc n¢xl 3 y¢4rs. Pagell eontiDued...

THE CHRONIC GRANULOMATOUS DISORDER SOCIETY Notes to IheFinan¢ial Stalement$- wntI￿Ued for theyear ended 31 March 2024 12. MOVRMETrrr IN FUNDS. continuttl Restrl¢ted Iulld$: Or¢haTd Th¢rapeulic$ the Charity. Orchrd Thernpeulicg- Newslet￿. this 16 funds rwxived tOWord5 the COB¢s of genNw¢thB tl* ll¢wsl¢tt¢r. Hospital Sfvttwday fimds- this is towatd5 th¢DursiDg s¢rvtcc provided bythe Cbarity Awards for All- thi8 is lowards informalion and Support provided by Ibe Charity. Childwi¢k TNsl- this is fijnds iOWArds Nursing seThi¢es provided by th¢Charity. Family Support - The support lI￿d 1$ th¢re to support eli8iblo fjmillu and INlivldual$ In th¢ UK affected CGD who ne￿1 fin4n¢ial sypport wi¢lL any me4lie•l rtlaied cost8. F8mily Support Ujis li fijnds tOWArds lh¢ fth)ily support activity provided by 13. RELATED PARTY DISCLOSURES A li¢¢nce fee is pid aDnu8lly lo the Chronlc Grnnulomatous Disorder Society (CGDS), which owns the Jeans for CJcn¢s Snd CJen¢ti¢ Disorde￿ UK (GDUK) tradomark$. The fee tolalled £644 (2025: £43.OCQ). Thi$ is paid by Jewi8 forG¢Dcs Cgmp8igTr. a ¢hllrity by CQDS. In a prior year CGDS made a loan to JeaTh8 for G¢n¢s CAmpD1￿, At the y¢4r ¢nd the kmowii owin8 on Ihis was£60,000 (2023 £1¢￿.000). after an ￿eMet1t w&$ re￿h¢4 with Jeans for CJ¢n¢5 Compftign ￿ wri1¢ offf H balllnLQ of £40.000 (included in oiher expenditur¢) from lh¢ loan ty fftcilitOt¢ tho windinB down of the thirity. The weement for this write otT wa8 Teached after the baign¢¢ sheet bul bi$ been ttfl¢e¢¢d wiihiti these aecourtts is art adjuslirtg subsequent ev¢tsL Page 12