2025-04-01-accounts

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1st April 2024-
31st March 2025
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Annual report & financial statements

supporting individuals and families affected by primary and secondary immunodeficiency

Find out more about our charity

www.immunodeficiencyuk.org

Contents

Why we are needed:

Currently in the UK

03 About Immunodeficiency UK 06 Trustees’ responsibilities and financial overview 07 Chairman’s statement 08 Our achievements at a glance 10 Living with immunodeficiency 13 Supporting the immunodeficiency community 14 Our helpline services 15 Our website 16 Raising awareness of immunodeficiency 17 Booklet and information development 18 Providing mental health support 19 Providing hardship grants and pain-relief devices 20 Our advocacy work Our incredible fundraisers 23 26 Financial statements

500,000+

people have an impaired immune system

5,000+

people have a diagnosed primary immunodeficiency

480+

different rare conditions are recognised as primary immunodeficiencies

6,670+

people with primary and secondary immunodeficiency rely on the lifesaving therapy immunoglobulin

Primary and secondary immunodeficiencies are underdiagnosed.

Immunodeficiency UK is the only UK charity that supports and represents people affected by primary or secondary immunodeficiency.

The need for Immunodeficiency UK’s patient support services has never been greater.

Charlie, who was diagnosed with severe combined immunodeficiency (SCID) through the pilot newborn screening programme.

About Immunodeficiency UK

Immunodeficiency UK registered as an independent charity on 20 January 2021 as a continuum of the work of Primary Immunodeficiency UK (PID UK) in representing and supporting individuals and families affected by primary immunodeficiency in the UK.

Building on the work of PID UK, Immunodeficiency UK supports people affected by primary and secondary immunodeficiencies.

Immunodeficiency UK plays a vital role in supporting and representing people affected by primary and secondary immunodeficiencies

Primary immunodeficiencies (PIDs) are a group of over 480 different conditions that affect how the body’s immune system works because some parts are missing or not functioning. Most people with PIDs are born with the condition. PIDs are mainly genetic disorders, meaning they are inherited and can be passed on from one generation to the next. Because PIDs are rare, some people remain undiagnosed for many years, resulting in organ damage and even disability.

Secondary immunodeficiency (SID) occurs when the immune system is weakened by a treatment or another illness. There are many potential causes of SID but the most common examples are blood or bone marrow disorders and certain drugs and treatment for cancer. Some cancers can be responsible for SID, too.

Having a PID or SID means having reduced or no natural defence against germs, such as bacteria, fungi and viruses, which surround us every day. So, people with PID and SID get severe infections more often than is normal; they can take longer to get better when they have antibiotic treatment and, even then, the infections can keep coming back.

A large proportion of people affected by a PID or SID require immunoglobulin replacement therapy, which is produced from donated plasma. This therapy, along with antibiotics and other antimicrobial medicines can help keep those with immunodeficiency free from infection. More specialised treatments and potential cures for PID include haematopoietic stem cell transplant, enzyme replacement therapy, thymic transplant and gene therapy.

Some of the challenges faced by people affected by these conditions:

Delays in getting a diagnosis

• Frequent medical admissions and appointments High burden of treatment and care

• Extra financial difficulties including costs associated with travel to appointments and loss of income due to poor health and inability to work

Lack of knowledge, understanding and awareness among healthcare staff

• Negative impact of living with a chronic condition on mental health and well-being.

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About Immunodeficiency UK

Immunodeficiency UK is the voice of people affected by PID and SID

Our mission and strategy

We work with patients, healthcare professionals and other organisations to ensure that those affected by primary or secondary immunodeficiency have the knowledge needed to manage their condition effectively. We aim to ensure that their health needs are understood and addressed by those involved in policy and delivery of healthcare.

To help Immunodeficiency UK in its work, we are a member of several umbrella groups, including Genetic Alliance UK, Gene People, the Specialised Healthcare Alliance, The National Council for Voluntary Organisations and The Foundation for Social Improvement. We are the UK national member of the International Patient Organisation for Primary Immunodeficiencies (IPOPI).

Our main strategic priorities are:

• To provide assistance, advice or guidance in relation to the diagnosis, management and treatments for primary and secondary immunodeficiencies, and to improve quality of life for those affected

• To promote awareness and understanding of primary and secondary immunodeficiency, and the impact on those affected, among the general public and within the medical profession To provide a helpline service, events, practical support and advice

• To encourage and support research into the causes, treatments, prevention and cures for primary and secondary immunodeficiency, and to publish the useful results of that research.

Our trustees

Dr Matthew Buckland (appointed January 2021; resigned March 2025) – Chair Valerie Brisse-Uhlig (appointed March 2022) and appointed as Chair, March 2025 Hannah Bruce (appointed January 2021; resigned March 2024)

Tamara Moubazbaz (appointed October 2022; resigned January 2024) Jane Shepard (appointed March 2022) - Treasurer Diane Hammond (appointed March 2022) Annette Toft (appointed September 2024) Clare Brailsford (appointed September 2024) Tom Taylor (appointed January 2025)

Our staff

Dr Susan Walsh - Chief Executive Officer (CEO; full time) Fay Fagon - Digital Communications, Marketing and Fundraising Assistant (14 hours/week)

Our advisory panels

Immunodeficiency UK is extremely grateful for the support of our patient representative and medical advisory panels.

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About Immunodeficiency UK

Patient representative panel

Our patient representatives are dedicated volunteers who act as advisers, ambassadors and spokespeople for Immunodeficiency UK. They are either directly affected or have a family member affected with an immunodeficiency.

Marian Armstrong ( Cumbria and Lancashire) Margaret Bennett ( West Midlands) Hannah Bruce (South-East) Hannah Butler ( London)

Samuel Davis

Clare Dyer (South Wales)

Patricia Hamilton

Michael Ingleston ( Northern Ireland) Rae McNairney (Scotland) Drew Tyne ( London) Fiona Watt ( Scotland)

Medical advisory panel

The Medical Advisory Panel reviews the content of our patient information to make sure that it is of high quality, clinically and scientifically. The panel provides updates to the charity on advances in immunodeficiency, scrutinises new projects and ensures that Immunodeficiency UK is engaged in activities that are medically sound and based on up-to-date science.

Dr Peter Arkwright, Consultant Immunologist, Dept of Paediatric Allergy and Immunology, Royal Manchester Children’s Hospital

Dr Matthew Buckland (Chair), Consultant Immunologist, Great Ormond Street Hospital and Barts Health NHS Trust, London (resigned March 2025)

Dr Mari Campbell , Clinical Psychologist, Royal Free London NHS Foundation Trust and Honorary Associate Professor, University College London

Emily Carne , Advanced Nurse Practitioner, Dept of Immunology, University Hospital of Wales, Cardiff Professor Helen Chapel, Professor of Clinical Immunology, John Radcliffe Hospital, Oxford Lucy Common , Immunology and Allergy Advanced Clinical Nurse Specialist, Salford Royal Hospital Dr Lisa Devlin , Consultant Immunologist, Regional Immunology Service, Belfast

Dr Tariq El-Shanawany , Consultant Clinical Immunologist, University Hospital of Wales, Cardiff Dr Tomaz Garcez , Consultant Immunologist, Central Manchester University Hospitals, Manchester Dr Aarn Huissoon , Consultant Immunologist, University Hospitals Birmingham

Dr Tasneem Rahman , Consultant Immunologist, Epsom & St Helier University Hospitals NHS Trust South London and Surrey

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Statement of Trustees’ responsibilities

The trustees are responsible for preparing the trustees’ report and the financial statements in accordance with applicable law 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 charity and of the net incoming resources for that period.

Structure, governance and management

Governing document

Immunodeficiency UK is a registered charity and governed by its constitution dated 20 January 2021.

Trustees

The board of trustees is responsible for the overall governance, policy and strategic direction of Immunodeficiency UK. The trustees have the legal responsibility for charity operations and the use of resources in accordance with the objects of the charity. During the period 1 April 2024 to 31 March 2025, the trustees met a total of 7 times.

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 the CEO, who reports to the Board of Trustees. The CEO publishes reports and performance indicators for each trustee meeting which are then used by trustees to judge progress against strategic priorities for the year.

Risk management

The trustees have overall responsibility for ensuring that Immunodeficiency UK is managing risk in a professional, responsible and constructive manner. 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.

Financial overview

Total income for the year was £108,694, compared with £89,709 for the financial year 2023-24. This year the expenditure was £99,242 compared with £112,809 for the financial year 2023-24.

Reserves policy

The trustees, as part of their risk management policy agree to maintain a minimum level of contingency within free reserves to provide against any unforeseen changes in income and/or expenditure. Total reserves as of 31st March 2025 were £94,349 of which £19,165 related to restricted funds leaving £75,184 of unrestricted funds. These free reserves equate to 8.7 months of operating costs and are therefore in keeping with the reserves policy of holding free reserves equal to a minimum of 5-8 months operating costs (presently £8,600 per month).

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Chairman’s statement

The financial statements have been prepared in accordance with the accounting policies set out in note 1 to the financial statements and comply with the charity's governing document, the Charities Act 2011, 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).

I am honoured to have taken over from Dr Matthew Buckland as Chair of Trustees of Immunodeficiency UK, following his retirement on 31st March 2025. His commitment, also as Chair of the Medical Panel, over the past 12 years has helped shape who we are today – a stronger, more responsive, independent charity advocating for real change. We are incredibly grateful for Dr Buckland’s support and guidance, and wish him all the best.

Having been a Trustee for over three years, I have gained a good understanding of the charity’s work and the needs of the immunodeficiency community. I have a deep passion for supporting this community and, as the new Chair of Trustees, I look forward to helping steer the charity through its next phase of growth and impact.

We welcomed three new Trustees in the 2024-2025 period and their insights and guidance have been invaluable in helping shape our recent activities.

Importantly, the quantity and quality of projects delivered by our staff is very impressive and I am deeply grateful for their relentless efforts and commitment to Immunodeficiency UK, the individuals affected by immunodeficiency and their families, and healthcare professionals.

The extent and impact of these efforts can be seen through the fantastic tangible results achieved. They follow the many activities conducted on multiple fronts, as you will see outlined in this Annual Report: advocacy projects and events, a helpline service, mental health workshops, research support, as well as development and dissemination of information and educational materials. A key highlight included advocacy for access to a treatment for a rare primary immunodeficiency – the first-ever treatment for this condition licensed for NHS use in England and indeed in Europe.

Our increased presence through social media and our website has also gone from strength to strength. The Immunodeficiency UK website provides our community with a wealth of up-to-date information and resources on many immunodeficiency conditions, treatments and immunisations, for example, and is often a go-to for patients, carers and healthcare professionals.

Finally, a heartfelt thank you to all our volunteers and those involved in fundraising activities. I am truly grateful for your dedication and support, it means a lot to us.

Valérie Brisse-Uhlig, Chair of Trustees

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Our achievements at a glance

278

people were supported through our phone and email helpline service.

3,445+

information booklets sent to immunology centres and individuals.

Thirteen hardship grants were awarded to individuals to help with Summer Highlight the financial strain of accessing healthcare.

We provided 27 Buzzy Shot devices to families.

These make treatment sessions using needles less traumatic for children.

We launched two new patient guides and updated three other booklets.

On average 3,274

people visited our website each month.

We had

Over 1,300 people subscribed to our monthly email newsletters, keeping them updated on research,

treatments, our activities and fundraising.

6,615 booklet downloads

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Our achievements at a glance

We advocated for access to specialised treatments and better care with NICE, NHS England and NHS Scotland.

We supported members with the psychological impact of immunodeficiency, holding

online workshops on managing Summer Highlight the transition from paediatric to adult care, dealing with uncertainty and an 8-week mindfulness course.

We championed early diagnosis of immunodeficiency conditions, working with Genomics England and the UK National Screening Committee overseeing the newborn screening pilot for SCID.

We helped raise public awareness of immunodeficiency and the need for plasma-derived therapy through patient stories and our involvement in global campaigns.

We had 181 new member registrations. Our Facebook reach extended to 44,808 people, and our Instagram account now has 697 followers.

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Living with immunodeficiency

Brooklyn’s journey with CD40 ligand deficiency

Brooklyn was just ten months old when he was diagnosed with CD40 ligand deficiency, a rare primary immunodeficiency. Five months later, he underwent a life-saving stem cell transplant.

Choosing the transplant was not easy. “As parents, we had to decide for him, and that was incredibly difficult,” they said. “But the risks of not doing it were greater – lifelong medication, frequent hospital visits, and constant fear of illness. We wanted more for Brooklyn.” Brooklyn’s parents were fortunate to find multiple donor matches quickly, something not all families experience.

In the lead-up to the transplant, keeping Brooklyn safe from infections was their top priority. “Even a simple cold could be dangerous. We had to isolate him – no playgroups, shops, or family visits. It was tough.”

At 15 months, Brooklyn was too young to understand, but the family was determined to give him the best chance of a healthy future. They travelled to the Great North Children’s Hospital in Newcastle for his transplant. After a full assessment, they relocated for the procedure. Brooklyn was admitted to a specialist ward, received chemotherapy to prepare his body, and was supported through the difficult days that followed. He became very ill, needing nutritional support and multiple transfusions. Complications kept him in hospital for nearly four months, but eventually he was strong enough to return home.

Now, Brooklyn is thriving. He continues to receive immunoglobulin therapy and medications while his immune system strengthens, but he can now enjoy things like cuddling his grandparents and going swimming. “He’s always been a happy, sociable boy; it’s wonderful to see him enjoy life again.”

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Living with immunodeficiency

Charlie’s story about SCID

Jennifer is mum to Charlie, a bright and happy little boy whose life was saved by newborn screening for severe combined immunodeficiency (SCID).

Charlie was born in October 2021, healthy and content. At five days old, he had the routine heel prick test, something Jennifer, as a second-time mum, did not think much of. Two weeks later, the phone rang — Charlie had screened positive for SCID. It was a total shock. He looked perfectly well, and there was no family history of immune disorders. But further tests confirmed the diagnosis. SCID, which severely impairs the immune system, meant Charlie was highly vulnerable to infection. The only chance of a cure was a stem cell transplant. The family immediately began isolating at home to protect him while the search for a donor began.

Thankfully, Charlie’s dad was a match, and they travelled to the Great North Children’s Hospital in Newcastle to begin treatment. Saying goodbye to Charlie’s older brother, Alfie, who stayed in Manchester with his grandparents, was heartbreaking, but necessary. Charlie had a week of chemotherapy before receiving his transplant. The following weeks were tough — he battled sickness, weight loss and painful side effects, but slowly began to recover. By seven months old, his immune system was working well and life could return to normal.

Today, at nearly three years old, Charlie is thriving. He rarely gets ill, no longer needs medication and has enjoyed all the milestones of toddler life, including his first trip abroad. He attends nursery, plays with Alfie and lives as any healthy child would.

Jennifer says: “ Charlie is a shining example of what can be achieved when a diagnosis is given early. This, alongside the incredible knowledge, care and quick action he received means that he can walk into preschool today ready to make friends and learn, just like all the other three-year-olds in the room. We need the UK to fully adopt newborn screening for SCID as soon as possible to save children’s lives.”

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Living with immunodeficiency

Jess’s story of living with secondary immunodeficiency

Jess was diagnosed with secondary immunodeficiency following treatment with the drug rituximab that she received to treat GPA Vasculitis (Granulomatosis with Polyangiitis).

In 2023, Jess began experiencing persistent symptoms, including a chronic cough and swollen neck lymph nodes. In August 2023, severe cervical lymphadenitis caused airway obstruction, requiring hospitalisation and marking the start of a difficult period. Her cough persisted, disrupting sleep, social life and overall wellbeing, while repeated infections led to sinus and ear complications.

After eight months of ongoing illness, an MRI scan revealed lung damage from infections, and Jess was diagnosed with secondary immunodeficiency linked to her rituximab treatment.

Her management plan includes weekly self-administered subcutaneous immunoglobulin infusions, prophylactic antibiotics, and regular monitoring.

Living with the condition has required lifestyle changes. Jess uses spoon theory to manage energy, follows strict hygiene practices in her education role, and benefits from a supportive employer offering flexible work arrangements. Her main challenges include managing infusions, medical admin, infection monitoring, and maintaining energy levels. She credits Immunodeficiency UK for providing valuable information and hope through patient stories.

She advises others with similar conditions to simplify medical routines, prepare for lowenergy days, set realistic expectations, and build strong support systems.

Jess says “Immunodeficiency UK has been an invaluable resource, particularly their case studies, which provided hope and practical advice during the early stages of my diagnosis. Reading about others' experiences helped me see a positive future and gave me confidence that my symptoms could be managed effectively. ”

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Supporting the immunodeficiency community

Over the last year, our work centred around five core areas:

• Sharing trustworthy information through a range of channels, including our website, print materials and newsletters

• Providing practical and emotional support via phone and email Increasing public understanding of immunodeficiency conditions Championing mental health as an essential part of overall wellbeing Advocating for individuals and families living with immunodeficiency to help shape better healthcare services and ensure access to new treatments

Our e-newsletters

We produced monthly e-newsletters that shared awareness campaigns, research findings, latest developments in treatments including a major change to how the NHS delivers immunoglobulin therapy, fundraising activities and updates on our advocacy work. The average open rate of the newsletters was 45.7% (range 42.8% to 46.9%). These figures are above the average open rate of 28.6% quoted for non-profit communications (source: NonProfit Tech for Good: Email marketing statistics & benchmarks).

45.7% open rate

6.17% click-through rate

When I tested positive for COVID, I knew that I was entitled to antiviral treatments. I also remembered that I had seen, in the Immunodeficiency UK newsletter, that the process had changed. So, my first port of call was to check the Immunodeficiency UK website and there was a dedicated page which was very helpful in pointing me in the right direction very quickly. So, I followed the guidance and process for my location and got prescribed the medication later on that day. Thank you very much, Immunodeficiency UK.

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Dominique, a patient with primary immunodeficiency

Our helpline services

The demand for our online and telephone helpline services remained high. In this period, we received 278 new enquiries. We were a trusted source of information for affected families and professionals. We dealt with queries relating to accessing a diagnosis of immunodeficiency, to treatments and care, benefit entitlement and employment-related issues. Significantly, nearly 11% of queries were about access to COVID-19 vaccinations and medicines, highlighting that these remained issues for our community.

278

Number of new enquiries

44

Number of recontact enquiries

“Thanks so much for your time on the telephone this morning and your follow-up email. You have certainly helped put my mind at rest”. A secondary immunodeficiency patient.

297

Emails/letters sent

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Support offered Phone & Email31 Phone only41
Number of queries
100 Our enquiries
80 How queries
were
answered Medical professional
60 47
40
Email only
20
225 Type of
enquirer
0
Family member/patient
250
Emotional supportDiagnosisTreatmentEmployment related BenefitsInsuranceCOVID-19 related Other
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I found the Immunodeficiency UK helpline to be very useful. I left a message and got a call back within the hour as I was concerned about my immune system antibody levels. The lady who rang me back was great and emailed me some very helpful information sheets, including one for my GP. I was offered support and guidance and would recommend the service as the first point of contact to anyone with primary or secondary immunodeficiency. Anthony, who was concerned about his antibody levels

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Our website

This year, our website continued to serve as a vital hub for people affected by primary and secondary immunodeficiencies, their families, and healthcare professionals. We’ve worked to ensure the site remains accessible, informative, and up to date with the latest medical guidance, patient support resources and research developments. Whether users are seeking a diagnosis guide, downloadable leaflets, or details on our helpline, our site has provided a reliable first point of contact and a trusted source of information.

Website traffic has continued to increase. Average page views increased from 7,200 monthly to 8,000, monthly unique visitors from 2,022 to 3,274 and monthly booklet downloads from 530 to 551.

Three weeks ago, I was diagnosed with primary immunodeficiency. Coming to terms with this diagnosis has been incredibly challenging. It’s been an overwhelming month, filled with a lot of emotion, uncertainty and anxiety. Yesterday, I began lifelong immunoglobulin replacement therapy (IVIG).

The website attracted users from over 170 countries outside the UK, including the USA, Australia, Canada and India, and countries throughout Europe.

While researching the condition, I came across your charity and website. I shared it with friends and family to help them understand more about primary immunodeficiency, and it’s been an incredibly valuable website in explaining such a rare condition. I’m really grateful for the clarity and support it’s provided.

Maddison, a newly diagnosed primary immunodeficiency patient

Top downloaded booklets

Secondary immunodeficiency

Keeping well and healthy with a PID

Primary immunodeficiency – the basics

Subcutaneous immunoglobulin (SCIG) infusions – a practical guide for patients Immunoglobulin replacement therapy - one size doesn’t fit all

96,763 pageviews

39,285 unique visitors

6,615 booklet downloads

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Raising awareness of immunodeficiency

World PI Week 2024

Immunodeficiency UK took part in World Primary Immunodeficiency (PI) Week, reaching over 7,800 people through social media. Our campaign focused on plasma donation and emphasised how important plasma is in the production of the life-saving medicine, immunoglobulin.

reach c.7,800 people 468 post clicks

Rare Disease Day 2025

On Rare Disease Day, our social media campaign highlighted the critical importance of newborn screening in the early detection and treatment of immunodeficiency.

reach c.4,200 people 187 post clicks

Raising awareness about the importance of an early diagnosis of Severe Combined Immunodeficiency (SCID)

Rhys (in the orange t-shirt) with his parents and his brother Owen who was his bone marrow donor.

Rebecca's family history and experiences show how early testing and diagnosis of SCID is vital so that prompt treatment by a bone marrow transplant can be given to save a child's life. The family lost their first child, Scott, because the diagnosis was not made early enough to prevent the infections that took hold of his fragile body.

Rebecca went on to have another two children. Aware of the family history of SCID, they were offered a simple blood test for each child at birth. This simple life-saving test confirmed that their third son, Rhys, was SCID positive, and he had a bone marrow transplant to give him a healthy immune system.

Rebecca says “I can't stress how crucial early diagnosis of SCID is to improve the life outcomes of infants born with this condition. That is why adoption of a UK-wide newborn screening programme for SCID is imperative.”

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Booklet and information development

Responding to the needs expressed by the community and immunology specialists, we expanded our portfolio of educational leaflets. We collaborated with immunology consultants and clinical nurse specialists from Great Ormond Street Hospital (GOSH) and the Great North Children’s Hospital (GNCH) to develop a new booklet, Immunoglobulin therapy: A guide for young people and their families.

The content was shaped with input from young people and parents who have first-hand experience of immunoglobulin treatment.

The booklet gives key information in a reassuring and accessible format and features photos of young adults receiving treatment, to give a sense of shared experience.

We also released a new patient guide: Specific antibody deficiency (SPAD). The guide explains this primary immunodeficiency in clear terms and covers symptoms, diagnosis and treatment options, such as antibiotics, and in rare cases, immunoglobulin therapy.

We updated the following booklets:

Immunoglobulin therapy for adults

Adenosine deaminase Severe combined deficient severe immunodeficiency combined (SCID) immunodeficiency (ADA-SCID)

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Providing mental health support

Supporting people with the mental health impact of living with immunodeficiency

Immunodeficiency UK held several mental health support events, recognising the psychological challenges faced by individuals living with primary and secondary immunodeficiencies and the lack of NHS mental health provision. Working with the mental health charity RareMinds we helped to address the emotional impact of being affected by a chronic condition.

We delivered two specialised workshops

• Managing uncertainty workshop : This small-group online session created a safe space for members to discuss the unpredictable nature of living with immunodeficiency conditions. Managing transition : Recognising the emotional strain on families during the transition from paediatric to adult care, this workshop addressed both practical and emotional aspects of this significant change.

The lady who ran the session was very Great session, really enjoyed listening welcoming and considered, prompting us to to others’ experience of living with a consider our daughter and the challenges for chronic condition and how it has transition as well as consider our own impacted them personally and feelings. It was very helpful to reflect professionally. together. A ‘managing uncertainty’ webinar attendee A ‘managing transition’ webinar attendee

Our mindfulness groups

• 8-week mindfulness course : Delivered via weekly sessions, this course was aimed at helping participants struggling with pain, fatigue and anxiety. The course provided in-depth, personalised teaching on mindfulness practices in a supportive environment. This was our second time running this course.

• Mindfulness refresher session : Based on positive feedback from previous participants, we offered a follow-up session to reinforce techniques and address ongoing challenges for those who took part in our first mindfulness course.

A participant told us: " Fantastic course. Helped with many coping strategies and managing anxiety, fear of illness, fatigue and overdoing things. Meditation is a wonderful thing I have discovered and the whole learning process was made so great by a fantastic teacher. "

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Providing hardship grants and pain-relief devices

Hardship grant programme

Immunodeficiency UK continued its vital hardship grant programme, offering £100 grants to individuals and families struggling to cover essential healthcare expenses. Immunology centres refer eligible patients who are facing financial barriers to accessing care. During the 2024/25 year, we awarded 13 hardship grants , providing crucial financial relief to members of our community.

These grants make a meaningful difference in the lives of recipients, helping to alleviate the financial burden that often accompanies living with an immunodeficiency condition.

“This support is very much needed for families like us with a child who was born with SCID & it will help towards the travel cost we so regularly incur with getting access to his treatments.”

Feedback from a mother of a child with Severe Combined Immunodeficiency (SCID).

Buzzy Shot pain relief programme

Our Buzzy Shot pain relief programme continues to provide free devices to children with immunodeficiency. These innovative devices help alleviate anxiety and discomfort associated with needle insertion, particularly for blood draws and vital immunoglobulin treatments that help prevent infections.

In this period, we supplied 27 Buzzy Shot devices to families, significantly exceeding our initial projections and demonstrating the high demand for this important support.

“Thanks for forwarding several Buzzy devices for use at our clinic. They have been fantastic for the children, who are delighted with them.”

Clinical immunology specialist nurse.

Poppy’s Buzzy story

This year, we received a heartwarming drawing from Poppy, a young girl living with with hypogammaglobulinemia, a condition that means she has low antibody levels making her prone to infections.

Poppy uses a Buzzy provided by us to help make her regular infusions of immunoglobulin, to top up her immune system, a little less scary and a lot more comfortable. Her cheerful picture, reminds us exactly why we do what we do: to bring comfort, courage and smiles to children facing medical challenges every day. 1919

Our advocacy work

Immunodeficiency UK continued to champion the needs of people living with primary and secondary immunodeficiencies, representing them in national policy, healthcare standards and in the development of research.

Shaping accreditation and policy

We contributed to the 5-year review of the Quality in Primary Immunodeficiency Services (QPIDS) accreditation standards led by the Royal College of Physicians. Our input ensured that the patient perspective was central to how services are assessed and delivered across the UK.

Susan, our CEO, with Mrs Sharon Hogson, MP for Washington and Gateshead South at the Parliamentary drop-in on the Generation Study

Championing early diagnosis

In January 2025, Immunodeficiency UK was one of four charities invited to a Genomics Englandhosted MP drop-in event at the Houses of Parliament to promote the Generation Study — an initiative testing newborns for over 110 genes linked to primary immunodeficiencies. We highlighted the potential for early, life-saving interventions and the need for investment as the UK newborn screening programme expands.

Working with Genomics England, we reviewed 32 patient information leaflets on primary immunodeficiency conditions for the Generation Study newborn screening project.

Supporting access to genetic testing

We supported access to pre-implantation genetic testing for the monogenic condition, known as PGT-M, for autoimmune proliferative syndrome through a statement to the Human Fertilisation and Embryology Authority. The statement reflected the experiences and challenges of living with this condition. The application was successful.

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Our advocacy work

Representing the voice of the community

Immunodeficiency UK provided the patient and public voice on the following committees:

NHS Scotland’s National Plasma Product Expert Advisory Group (NPPEAG)

UK Primary Immunodeficiency Registry (UKPID Registry)

NHS England’s Newborn Screening for Severe Combined Immunodeficiency (SCID)

Advocating for access to treatments and better care

In October 2024, Immunodeficiency UK’s CEO, and Sophie (pictured left with her son Jasper) were patient experts at a National Institute for Health and Care Excellence (NICE) meeting assessing the clinical effectiveness and value for money of the drug leniolisib, as a treatment for the rare primary

immunodeficiency called activated phosphoinositide 3-kinase delta syndrome (APDS).

Sophie, mum to Jasper who has APDS, shared her first-hand experience of the condition’s impact on her child and herself as a carer. The committee considered our testimony, the results of Immunodeficiency UK’s quality-of-life survey showing the impacts on other affected families, our formal consultation response, and the opinions of clinicians and other APDS experts. After further meetings and evidence presented by the pharmaceutical company, we were delighted that NICE recommended the use of leniolisib for patients with APDS, aged 12 years and over. It is the first-ever treatment for APDS licensed for NHS use in England and indeed in Europe.

We give huge thanks to Sophie for her involvement in this vital advocacy work for those affected by APDS.

We provided detailed feedback on patient care through national and international surveys, including:

NICE’s consultation on Summary of Information for Patients (SIPs)

European Society for Immunodeficiencies (ESID) survey on the need for PID-specific guidelines

The 2024 Rare Disease Quality Statement survey - ‘What does good care look like.’

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Our advocacy work

Plasma and immunoglobulin therapy advocacy

To highlight the urgent need to expand UK plasma collection to increase self-sufficiency in the availability of immunoglobulin products, we were invited to contribute to a Parliamentary roundtable discussion alongside NHS Blood and Transplant, MPs and other stakeholders. The event reinforced the critical importance of plasma for people reliant on immunoglobulin therapy and other life-saving plasma-derived medicines.

In 2024, the Medicines and Healthcare products Regulatory Agency lifted the 25-year ban on the use of UKsourced plasma for the manufacture of immunoglobulin. To help explain this major change to our community, we collaborated with NHS Scotland to develop the patient leaflet Plasma for medicines, and with NHS England on frequently asked questions to address any queries people had about this policy change.

Following the implementation of a new commissioning framework for immunoglobulin in early 2025, we held five meetings with the Medicines Value and Access Directorate at NHS England to explore the implications for people dependent on this therapy. We raised concerns about the reduced number of immunoglobulin products available and the need to switch large numbers of patients onto different products, the anxiety this would cause and the extra workload for immunology centres. Our plan for 2025/26 is to fully explore the impacts of commissioning changes through a patient and healthcare professional survey.

Supporting research

Immunodeficiency UK was a collaborative partner with the Murdoch Children’s Research Institute and the James Lind Alliance in developing the top ten research priorities for paediatric haematopoietic stem cell transplants. This work was shaped by the voices of patients and families, and we are grateful to the research team and the many families who contributed their experiences and insights.

We also partnered with researchers at Leeds Beckett University to develop and validate a patient-reported outcome measure (PROM) for people living with both primary and secondary antibody deficiency. PROMs are important tools to measure health outcomes from a patient perspective rather than from a clinical point of view, and currently, there are no validated measures for this cohort of patients.

We also:

Provided support letters for two clinical immunology research proposals

Used our newsletters and social media to promote participation in research studies

Shared research outcomes via our monthly newsletters and website updates

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Our incredible fundraisers

A huge thank you to Sophie and Micky, who raised over £2,500 for Immunodeficiency UK

Sophie and Micky took on a remarkable 870mile trek along the Welsh Coast to raise both awareness and vital funds for families affected by immunodeficiency.

Their inspiration? Sophie’s young son Jasper, who was diagnosed in August 2023 with a rare form of Activated PI3K Delta Syndrome (APDS) — a complex condition that had caused years of unexplained health challenges. Jasper is currently the only known child in Wales with this specific genetic mutation.

Moved by Jasper’s strength and resilience, Sophie set out to give back. Joined by her friend Micky, she completed the 135-mile Mighty Hike around Anglesey. Their efforts ensure that other families, facing similar uncertainties, can access the crucial support, guidance and community that meant so much to them. Thanks to their incredible efforts—and the generosity of their supporters—they raised an astonishing £2,500 . These funds will directly support families navigating the challenges of rare and complex immunodeficiencies.

£2,500 raised

Katy raised over £2,000 to support our work.

For Katy Rogers, completing the Brighton Marathon was more than a personal milestone — it was a heartfelt tribute to her sister Emma and a powerful way to raise awareness for those living with immunodeficiency.

Emma was diagnosed with Common Variable Immune Deficiency (CVID) at just 16 years old. Since then, Katy has seen the challenges Emma faces, from the difficulty of getting a diagnosis to the strength and resilience she demonstrates every day.

Motivated by her sister’s journey, Katy took on the Brighton Marathon and raised over £2,000 in support of Immunodeficiency UK. We are incredibly grateful to Katy for her dedication, generosity, and for shining a light on this important cause.

23

Our incredible fundraisers

Shauna’s skydive challenge raises £1,000 for Immunodeficiency UK

Driven by her love for her nephew, Oliver, Shauna completed an exhilarating skydive that has raised an amazing £1,000 for our charity.

Oliver has been courageously navigating the challenges of a rare genetic condition called APDS, which affects only 1 in 1 million people. This disorder significantly weakens his immune system, leading to the development of a chronic lung condition called bronchiectasis. Oliver’s daily routine includes a rigorous regimen of nebulisers, chest percussion and prophylactic antibiotics. Inspired by his resilience, Shauna decided to take on the thrilling feat of skydiving as a symbolic gesture of her love and support.

The funds that Shauna’s skydive has raised for Immunodeficiency UK will make a big impact. These crucial funds will go towards providing essential support to families like Oliver’s who are navigating rare immunodeficiency diseases.

On behalf of the entire Immunodeficiency UK team, we extend our heartfelt gratitude to Shauna.

£1,000 raised

24

Our incredible fundraisers

Katie, Andy and Jackie’s story

When Katie decided to take on the London Landmarks Half Marathon, it was not just about the challenge — it was personal. Living with an immunodeficiency herself, she wanted to raise awareness and support for others facing similar health issues.

She was joined by her husband, Andy, and sister, Jackie, forming a determined trio with one shared goal: to make a difference. Together, they trained hard and completed the 13.1-mile race in support of Immunodeficiency UK.

Their journey highlighted the crucial work the charity does for people affected by primary and secondary immunodeficiencies — work they have seen the importance of first-hand through Katie’s experience.

£2,300 raised

Together we can make a difference

Thank you…

£39,298

…to all the regular donations we receive, including those from anonymous donors; we don’t know who you are, but we are so grateful for your support.

raised through public donations

….to our corporate funders who have contributed to the work we have done this year ……

…to everyone who sent an in-memoriam donation or has pledged a legacy in their will to help support families with immunodeficiency in the future.

We couldn’t do what we do without you.

To make a donation, please go to http://www.immunodeficiencyuk.org/donate or scan the QR code

2522

Charlty roglstratlon numb¢r 1193160 (England and Wal¢sl IMMUNODEFICIENCY UK ANNUAL REPORT AND UNAUDITED FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025

IMMUNODEFICIENCY UK LEGAL AND ADMINISTRATIVE INFORMATION Ms D Hammond Ms J E Shepard Ms V D Brlsse-uhlig Mr T Taylor Ms C E A Brailsford (Appoinled 20 January 2025) {Appoinlgd 16 Seplember 20241 (Appoinled 16 Seplember 2024) MsAToft Charlly numb•r (England and Wales) 1193166 Reglstered offi¢e PO Box 12635 Col¢h9sler Essex United Kingdom C07 SAN Ind•pendtrnt •xamln¢r Hazel Day Nlghtlnuale Hous8 4648 East Str801 Epsom Surr6y United Kingdom KT17 1HQ

IMMUNODEFICIENCY UK CONTENTS Pago Tmstè8s' report Independent oxamineys report Statement of ffinancial activilias Balance sheet Notes lo tha flnanclal slalemenls 10-19

IMMUNODEFICIENCY UK TRUSTEES. REPORT FOR THE YEAR ENDED 31 MARCH 2025 Tho trusteos prosent thelr annual report and financial statements for the year ended 31 M#r¢h 2025. Tho finonoial statements have b8en prepared In accordance with the accounting poliei&s sel oul in nole 1 to Ihe ffinanci81 statements and comply wllh Ihe charivs governing document. the Chaiitl08 A¢1 2011. FRS 102 'Tha Financial Reporting Standard applic8bl¢ in the UK and Republic ol Irel8nd' Bnd Ihe Charilies SORP 'Accounling and Roporting by Charities.. Slatemenl of Recommended Praclicg appll¢8ble lo ch8rf1i&s preparir$9 Ihalr accounts in accordance wilh th8 Finanoal R&portlng Slan<lard applicable in tho UK and Republic of Ireland {FRS 1021" Objecllves and a¢tivitlos We work on bgh8lf of people affected by primary or secondary immunodef￿1￿nCY in Iho UK and Ih&lr18mllles. Our mission 15 to work with paliénls, h&811hcar8 prof8ssionals and relovant organisalions lo ensure that those afftscled by prlmary or sewndary immunodeficienGy have the knowledg8 ngedgd lo manag0 Iheir ￿ndItiOn effecllvely. We aim Its ensurè Ihal pati6nts' health needs are understood and ad¢fressed by those involved In heallhcare pollcy and delSvery. We are dedicated lo helping peopla affected by immunodeficiency through our information, poer 8UPPOrt and advocaoy aclivilies. and lo supporting and gmpow¢rlng peoplp lo und&rstand and manage their condition. We mak6 11 eagy for our mambeTS to participate In research Iréals lo lurthor tho sear¢h for Irea¢menls and a cure. Our oble¢Uv8s, as sel out In our Mgmorandvm and Articlos, are.. Tha advancement of heollh and tho rellof ol people affected by primary or sacondary Immunoden¢58n¢y and Ih8lr families and people respon8lble for their welfare. in¢ludlng'. by providing a8slstan¢e, advlce or guidance In relollon lo managing Iheir condition and improving the diagn08is of Ihase conditions. their Irealmenl and Ihe qualily of lile of th088 affeclod by prornoling awareness and und8rs18nding ol primary 8nd secondary immunodelciency wilhln the general publ1¢ and medlcal profession in order to better understand these condlllons and their Impact by providing a helpline 8ervi¢ts, evants and pr8¢tlcal hèlp 8nd advle8. To 8n¢ourag8 and 8ilPPOrt resear¢h Into the causes, Irealments. prevention and cures foT wimary and secondary Immunodoflclency, and lo publish Ihe useful iesulls of that research. PvbliG benefi¢ In sellln9 obl¢¢llv¢s and plannin9 a¢llvi1Ses. Ihe Iruslees have given due ¢onslderallon lo general guidan¢e publlshed by the Charity Commission relating lo public benofil, including th8 guidance 'Public benefil.. running charity (PB21'. Repr688nlation To help Immunod8ficiency UK in its work, wa ar6 a m&mb8r of saveral umbr8118 oroupg, Including Gentrllc Alliance UK, Gene P8opI8, the Spè¢lalls8d He811hc8rè AllSance and Ihe Nallonal Council for Voluntary Organisations. Immunodefici8ncy UK is the UK national member of ihe Inlernalional Pallent Organ188llon lor Primary Immunod&ficiencies (IPOPII. We are re9lSt6red with th8 Fundfa181ng Regulator. Achlevements and performance Slgnifioanl activllies an(J achievemenls against objectives Our holpllno servlco and other $upport a¢llvlllos Th& demand for our onlinè and lelephone helpline seNle8s remained hlgh.. we d831( wllh 278 new enquiries120231 24.. 261 I. We provlded emolonal support and acted as a trusted sour¢9 of inlormalion lor affeclod families and h8althcare prolèsslonals. Wg answered querles felaled lo accessing a diagnosls ol Immunodeficiency. trèalm8nls anrl caré. bènefit enlillement and etllploymenl. Nearly 11 por eénl of queries were aboul access lo COVID-19 vaccinations and aniivir81 m8dlcalion, proving Ihat Ihesg Issuos remain a concem lor our community. Through OLtr hardship grant schema, we awarded 13 gran18 12023124.. 91. Thèse granis hglp ppop19 and families with travel c051s io ac¢¢ss healthcare seNices.

IMMUNODEFICIENCY UK TRUSTEES, REPORT (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2025 Wg provided 27 larrilios with Iree 'Bvziy Shot, pain relief devices12023124- 61. These rleviws reduce Ihg lear arid the pain associated with needle insertion lor blood tesis and for cwclal Immunoylobulln Ihorapy that keeps children free from Inlecllon. Mental health support Immunodaficiency UK htsld sevoral mental health supporl evenls. r¢Tr)gnlslng the psychologl¢al challenges faced by Individuals Ilvln9 wllh prfmary and secondary immunodeficiBncies and the lack of NHS mental heallh provision. We worked with the mental health charity Rareminds lo delivei iwo specialised workshops. Th8 first, Manaolng un￿rtainlY. gave advlce on how lo deal wilh the Unp￿dICtable nolure ol living wilh immunodeficiency. The second. Managlng Trar¥silion. re¢ogni5ed Ihg emotional slrgin on young adults and famili88 dyring the Iran8ilion from pae¢Ji8tric 10 8dull carg. We ran an eight-week mindfvlness course. with weekly sessions aimed at helping participants struggling wlth paln, faugue and 8nxlely. The cours8 provided in41eplh. peisonallsed leaching on mlndfulness pr8clSces In a supportlve environment. This was our sècond tlma ¥unning Ihls coursa. Wa also provldèd a mindfLJlne$$ r&fre$her cour$8 fly those who had lak8n part in our flrst mindfulness course to relnlor¢e le¢hnique¥ and addre35 ongoing challenges. A total ot 40 people took part in Ihese evenls, and 85 p8r cent of pariicipants recommand8d that thè support b& offèred to olherg. Following the success and reported benefits reporled by participants, we will continue lo work with Rareminds to provid8 tailored mental h&81th suppori programmes in 2025126. Informatlon dovolopm8nt and Illssemlnatlon Over 1,300 pèoplè subscrfb8d to OLir monthly e-ngwsl¢tters that share ￿mMUnity new8, re8ear¢h findings, latest developments in Irealmenis. fundraising activiligs and opportunili8s lor clinical trial involvemenl. The average open rale of the newslellers was 45.7 per cent Irange 43.9-50.7 per c8nll- These fi9ures are above the average opon ralg of 28.6 per cfjnl quoted lol non-piofil communl¢allons Isour¢e.' Nonprofit T6ch for Good.. hllps.-11 ww.npte¢hlorgood.com1101-besl-pracliceslemail-Markeling-slalislics-lor-nonprofilsll. We prowoled our charity'8 SUPPOrt services and materials lo immunology medical profession818 through th largeled mailin9s. We had a promolional sland al Ihe annual ItTrwunolDgy and A1181gy Nur8es Group conlerence held ITI Birmingham. Through our on4em8nd ordor sgrvi¢e lor mgdicol professionals, we provided 3,275 booklets lo support patients al immunology ¢enlres. We also dislribuled 337 of our booklets direclly to newly dlagnos8d patients or those navigating Ihgir Irealmgnl palhway. Our wèbsite- our major Sou￿ of infomallon lor Ih08e aifecled by Immunodeficiency- had high traffic, with 96,763 page vitsws, 39,285 unique visilors and 8.615 booklel downloads. The websll8 hos18 75 different educatlonal booklets. The booklels most Irequently downloaded in 2024125 were Secon(18ry immunodeficiency. Koeping w811 and healthy when you have a PID. Primary Immunodeficioncy the basics, SubcutaneoLJS infusions ol immunoglobulin- a practical guido for patients and ImmuNJglobulin replacgtnenl therapy- one size doesn't fil all. During lh8 reporting period, the website alliacled ysers Irotn ovgr 170 countries Outsid8 th9 UK, including the USA, AuslfBlia, Canada and India, and wunlries throughout ELtrope. Through the wabsile an¢J OUT newsleller. we kept Ihe community updated on COVID~19 vaccination avallabilily, access lo COVID-19 8nlivlral m8dl¢alion. the inlroduclSon of UK-plasma-d¢rived immunoglobulin producls and chang8s In tho lange of immunoglobulln products available lo p8llenl8 due lo NHS declsSon-making and Ihg Implications lor pallenis. care. Devèlopmènt of infomiatlon 18afl&ts #nd webslte content Responding lo the needs expressed by the communily and immunok)gy spgciali8ts. we 8XP8nded our portfolio ol edu¢alional18aflels. Wè eollaboraled wilh immvnology consullanls and Clinica1 nurse speci81isls from Gre81 Ormond Slrgel Hospital IGOSHI and th8 Great North ChSldren'8 Hospital IGNCHI lo develop a n8w booklet, Imrnunoglobulin therapy.. A guide lor young people and thelr families. Thg Content was shap&(S wilh Input from young p¢opla and parents who have first-hand experi8n¢e of immunoglobulin Irealmenl. The booklet gives key Information in a reassurfng and accessible fomal. and fealuros photos ol young adults receiviT)g ITealm8nl, lo givo a sens8 or sh8red 6xpeTien¢o. With GOSH 8nd GNCH. wg 81s0 updated our information booklets on 8ever8 comblned immunodeflelency ISCIDI and adenosine deamina88.defrcienl SCID IADA-SCID}.

IMMUNODEFICIENCY UK TRUSTEES. REPORT (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2025 We released a new palienl guido.. Specific antibody deficiency ISPADI. The guide explains this primary immunodeficiency in deal terms and Govers symptoms, dia9nosis and Irealmenl opuons. such as anilbiotlcs, and in rare ￿Ses, Immtjnoglobulln therapy. Ralslng awareness of Immunodofi¢len¢y and Ils Impact For Ihose living wilh Immunodeficiency, learning 8boul the experiences of others who have been diagnosed with the same ¢ondilion can be a valuable means of support. We added four pallenl stories lo our Ilbrary of lived experience slorias. includlng Ilving with secondary Smmunodefi¢iency and CD40 ligand deficiency. Two other stories highlighled Ihe importan¢e of earfy diagnosis ol SCID Ihrough newbom screening and subsequent successful Ir¢iilmenl by stem cell Ifansplant. We thank all involved for sharing Iheir experience. Wè w8r8 involved in S￿141 media campaigns lo suppx)rt our mission and lo highlighl the experiences of our community. These Included Rar8 Dl8e839 Day, Wortd Primary Immunodeficlency Weok, Int6rn8tlong1 Pla3rn Awareness Week and World Anlimlcrobial Resislance Awareness Week. We had 181 n8w member regislralions and in¢re8s&d our social media presenc& over Ihe year. Our Facebook unique visitors reach was 44.80812023124= 26,8561. We had 9,265 vislts to OL*r FaCeb{￿k page lup 224 per cènt compared with 20231241, and we had 198 new followers lup 29 per cent). We galned 68 new Inslagram lollow8rs. and our reach Inc¥e8sed by 1.100 pBr cent 10 8.052 on this p18tform. We also recgiv8d 1,006 visits lo our Inslagram page, which is an incre8se of 240 per cent on the previou5 year. Our advocacy work was our most popular content. followed by patient storios. Th8 averago opon rale ol our new318ttgTS was 45.7•A (range 42.8Q/ts to 46.9°hl. These figures are above th8 averagè opèn rate of 28.69/0 qUOt¢d for non-profit communlc8llons (source: NonProfll Tech for Good.. Email marketing slalislics & b8nchmarksl. Supportlng research and Involvement In ¢llnl¢al trlal$ Immunodeficiency UK wa5 a collaborative partner wilh th8 Murdoch Chlldren's Research Inslllute and the James Llnd Alliance in developlng the lop len research prioriligs lor pagdialric haemalopoielic stem cell tr8nsplanl$. Th1$ work was shaped by th9 vol￿S of patients and families, w$ are grateful lo the fe8e8rch leam and the many famili&s who ¢onlr4bvled Ihpir gxperionces and insrght8. We also partnered with rgsoar¢h&rs at Leeds Beckell Unlverslly lo d8velop and validalg a pallenl-reporled OLtlcome moasurg IPROMI lor people living with both primary and secondary anllbody doficl6n¢y. PROMS are important tools to measufe heallh outcomes from a patient perspectlva ralher than from a dinical point ol vlow, and Currently there aro no valldaled measures for Ihls cohort of patients. Al the reouesl of cllnical Immunology research teams. Immunodefi¢iency UK wrote lellers In support ol two research proposals. Our Èdvo¢acy Work to support the communlty Immunodeficiency UK continued lo advocate lor the needs ol peoplè Ilvlng with primary and sgcondary immunod&ficiencie3, represeTiling Ihem in national policy. h&allhc81e standards and the d¥vglopmenl and 8UPPOrt ol r8$tsarch. Our role as a pallent and publlc volce Immunodgficlency UK'S CEO was Ihg pall8nl repr8genlalive vol¢o IM the UK Nallonal Sueening Commlllee overseèing newborn scrotsning for SCIO. NHS Scotland's Naiional Plasma Product Expert Advlsory Group and the UK Prlmary Immunodeficlency Reglstry Committee, and on the Haplo+4Kids ctinlcal trial, which aims lo Improvs slam cèll transplant oulGom$s for children and 8dol&s¢enls with immunodeflciency. Representing our commuriity, we helped $hap8 care 8tandard3 by conlribulin9 to th& five-year feview ol the Quallty in Prin7ary Immunodaficiency Servtces accredilalion standards led by lh8 Royal College of Physicians. Our inpul ensured that the patient perspe¢livo wa8 central to how s8ryices aro a55e88ed and d&llvered across the UK.

IMMUNODEFICIENCY UK TRUSTEES. REPORT (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2025 Champlonlng early diagnosls Immunodeficiency UK wa5 one of four charities invited to an MP drop-in event at Ihe Houses of Parliament, hosted by Genomics England and Genellc Alllance UK. The event promoted th6 Generation Sludy, a research Inlllative lesling newborn bables for genellc condillons. including over 110 gen¢s linke(I lo prlmary immunodoliciències. We highlighted the potential for early, life-saving inlelvenlions and the need for investment as the UK ngwbom screenlng programme expands. Furthermore. Immuni)defic18ncy UK was approached by G9nomic$ England lo review 32 palienl informallon leaflets on primary imTnunodefici8ncy conditions for Ihg Goneralion Study newbom scr8enlng project. Our 8mendmenis and suggeslions were accepted. We supported acce88 lo pre.implanlalion genetic le51ing lor the Fnonogenic condition. known as PGT-M. lor autoimmun8 proliferalive syndrome through a 81alernent to the Human Feriilisalion and Embryology Avlhority. Th statement reflected th9 oxperionros challenge5 of livng wlh thls condilion. Tho application was successlul. Supportlng aG¢e$s to spoclallsed treatmènt Immunodeficiency UK advocated for access to Lenlollsib. a ireatmenl for the rare primary immunodèfrclen¢y activated phosphoinosilide 3-kinase dtslla yyndroma IAPDSI- In collaboratlon wllh lh8 Nalional Inslilule for Heallh and Care Excellence INICEI. we carried oul a Ouality￿f-l1(È Survey lo understand tha Impact of Ihls condillon on those affecle(S. Ihoir cJrers and wlder famlly. We submilled the report findings and our formal consullalion response lo NICE. Al the subsequenl NICE heallh te¢hnoliwy 8sses$menl m881ings. Immunod8fici&ncy UK'S CEO and a parent of a child affected by APDS gave teslimony as patient experts. Wa were delighled that NICE fin811y fecommended Leniolisib as a Irealmenl option for APDS. 11 Is U)9 first-ever tr8alm8nt for APDS licensed for NHS use in England and Ind¢ed In Europe. Plasma and Immunoglobulln thgrapy advoGaGy To hlghllght the urgant need lo expand UK plasma colleclion lo Increase 8elf-surficiency in the availability of immunoglobulin products, w6 weie invlled lo ¢onlribule to a Parllamentary roundlable dlscusgion alongside NHS Blood 8nd Transplant, MPS and other slakeholder8. The event reinforced the critical importance ol plasma for people reliant on immurtoglobLJlin th8r8py and olher life-saving plosmB4eiived medicines. In 2024. the Medicines and 118allhcare products Regulatory Agency lifted the 25-year ban on the use of UK-sourc8d plasm8 lor th8 m8nulaeture of immunoglobLtlin. To halp explain this major chang8 to otsr community. we collaboraled wth NHS Scotland lo develop the pallanl leaflet Plasma for medicines, and wilh NHS England on f￿qUentlY asked questlons to addrass any queries peopla had 8bout this polloy change. Following the implemenlalion of a new commissioning framework lor immunoglobulin in earty 2025. we held five me8llngs wllh Ihe Medl¢ineg Value and Access Direclorale at NHS England lo oxploi8 Ihe Smplicalions for people dgpendent on this therapy. We rai$ed ¢oncerns about Ihe redu¢ed number of immunoglobulin products avallable and Ihe need lo switch large number$ of patients onto different producls. the anxiely thSs would eause and Iho extra workload lor Immunology Cent￿S. Our plan for 2025126 Is to fully explore the Imp8¢ts of ¢omwnisslonlng chan9es Ihraugh 8 patl8nl 8nd ha8llhcare prolessional surv6y. We 81$0 providad detailed 1e8db8¢k tin patient care through naiional and inlernational surveys. in¢luding.' NICE'S consultaiion on the Summary ol Information for Palients, Iha Europgan Society for Immunodgficiencies. survey on thè need lor gtsldelin8$ $peeili¢ lo primary %mmunodtsficiencies and the 2024 Ra¥e Diseasg Qualily Statement 8urvey-.what does good care look like?.. Flnanclal revlèw FlnBncial posllion Our financial slatements for th& year are shown on pages 9 to 19. A summary oflhe finan¢lal results for Ihe year are sel ovt below. Incoming resourcos Tolal income for thG year was £115,552, compared wlth £89,709 lor Ihe financi81 year 2023-24. We did not receivo any incomo from legacies this year. Rèsources expended This year the expendi¢uTe was £114,253 comp8r8d wllh £112.809 for Ihe financial yeai 2023-24.

IMMUNODEFICIENCY UK TRUSTEES. REPORT {CONTINUED) FOR THE YEAR ENDED 31 MARCH 2025 Goftng conc8m After making appropriata &nquiries, Ihe Iruslees have a rea8onabl8 expectation that Ihg Charity had adequate resources lo ￿ntinUe In operAlional exlslence lor Ihe foreseèable future. For Ihls ￿ason. they continue to adopt the golng concern basis in preparing th8 Ilnancl81 slatemenls. Further deiails regardlng the adoption of the golng conGeTn ba51S C8n be IoLtnd in the Accfjunlirtg Poliei&8. ReseThes policy Toial rosgrvtss as of 31sl March 2025 w8r8 £94,349. 01 which £19.165 related Io Te81ricl8d fund8, leJving £75.184 of unrestricled lunds. Thtr Iw81ees consider Ihal il is bolh prudonl and aPPFopriale as part ol their risk managemgnl policy lo mainlaln a minimum lav81 of contingency wilhin free 198erves lo provlde a level of working capital th8t protects th& ¢ontlnuity ol our ¢oro work, lo provide a level ol f￿nding lor ungxpe¢l&d opportt+nltles and to provide cover for risks such as unforeseen exp8ndilure or unanticlpaled loss of income. Thg r&soNos pollcy conlinues lo be that holding unTe$liict8d free reseNes equal lo a mlnlmum of 54 months operating costs Iprèsèntly £8.600 por monthl. a$ an acceptabl8 level lo hold. This reflects a balance b¥lw8en b8lng prudenl and allowing Ihe charity lo direct as much rèsource as possible into achiev￿n9 Its charitable aclivilitts. As of 31st March 2025. Ire8 reserves totalled £75,184, equallng to 8.7 months of operating ¢o$ts and Is Iherefore in keeping with the reserves pollcy. Plans for futur¢ porlods OUR AIMS FOR THE NEXT YEAR To raise public awarene88 of prfmary and 8e¢oThlary immunodeficlency and providè support service8 lor those affecled To aijvocale lor acce86 lo spacl81ised medicines and improvements in caro To work with otjr communlty to define what needs lo be dono and make Ihe ￿se for funding To continuo lo r¢vl¢w our infomalion and devalop n8w content as needed To broaden incomp slreams, lo Snclude the selling of merchandise, lundraising from Irusls and foundations, ragular glvln9 and donations IhTough legades. Stru¢lur•, gov•rnanco and managoment The charily is controlled by ils governing documenl, a deed of Ifust and conslilulos an unincorpoRled Gharily. The Iru8tees who served durlng the year and up to the date ol signature of Ihg financial 31alemFnls werg.. Ms H A Bru¢e Dr M Bucklond s D Hammond Ms J E Shepard Ms T Moubazbaz Ms V D Bri889-Uhllg Mr T Taylor Ms C E A Brailsford MSA Toft (Reslgned 17 March 20251 (Reslgned 17 Maich 20251 (Resigned 20 January 20251 (Appolnled 20 January 20251 (Appointed 16 Seplember 20241 (Appointed 16 September 2024) R6cmitment and appoinlmenl of trustees The board of Iruslees is responsible for the overall govèrnance, poli¢y and direGlion of Immunodeffci8ncy UK. The Irustees have the leg81 responsiblllly for char4ty operatlon8 and Ihe usè of r&sour¢es in accordance with Ihè objects. During th& period 1 April 2024 10 31 March 2025, the Ir4J5tees m¢1 a toial 017 lime$.

IMMUNODEFICIENCY UK TRUSTEES, REPORT (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2025 Induction and training of tmsfeos New IDJsleè$ wer6 e16Cted by the Iruslee board following an open recnJilm9nl process. The iwslee$' report Was approved by the Board of Trustees. Ms V D Briss8-Uhlig Chalr of Trustees Data.. 2210112026

IMMUNODEFICIENCY UK INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF IMMUNODEFICIENCY UK I report to Ihg Iru$lè8$ on my examination of the financial sialemgnts of Immunodeficiency UK (th8 charilyl lor Ihg yaar ended 31 March 2025. Responslbllltles and basls of roport As the Irusle8s of thè charity you are responslble foi the preparalion ol Ihe financial stalemgnls In accordancè with the r8qulrgm8nts of Ihe Chafi1198 Act 2011. I raport in resp&¢l of my examination of the charity's flnanci81 slalements ¢8rried out under section 145 of the Charille8 Act 2011. In ¢arrying Out my examlnalSgn I havg followed the Dlrections glven by the Charity Commisslon under 8eclion 145(5llbl of Ihe CharS1ies Act 2011. Independent examlnerfs statement I report lo Ihe trustees on my examlnalion of th8 financlal slalemenls of Immunodeficiency UK {Ih8 charity) for Ihts year ended 31 March 2025. I hava complèlad my examinallon. l Confirm Ihal no matters have come lo my allenllon In connection with the exatrination gwing me cause lo bell&ve ihat In any malertal ￿spect.. a¢counling records were not kept in respect ol Ihe charily as requirfyd by secllon 130 of the Chariti88 Act 2011. Ihe Inanclal slalemenls do nol accord with those records.. or Ihe flnancial statements do not comply with Ihe applicable requiréments concerning the fomi and conlenl ol fin#n¢i81 sl8lemonls sel OL+t in the Charities (Accounls and Reportsl Regulallons 2008 other than any requirement Ihal the financial stalemenls give 8 IfYO 8nd fair view, which 15 not a matter considered as part ol an independent examination. I have no concerns and hava com8 a¢r08s no olher matter8 in con￿¢t10n wllh Ihe ex8mlnalion lo whlch atlention should b8 df¥wn in this report in order lo enable a proper understsnding of th8 financial 81alemenls lo be reached. Hazol Day BS¢ (Honsl FCA DChA Nighling&1ts Hovsp 46-48 East Slre¢l Epsom Surrey KT17 1HQ Unlled Kingdom

IMMUNODEFICIENCY UK STATEMENT OF FINANCIAL ACTIVITIES INCLUDING INCOME AND EXPENDITURE ACCOUNT FOR THE YEAR ENDED 31 MARCH 2025 Unrg$trl￿fjd R•strl¢t•d funds funds 2025 2025 Total Unrostrlcted Restrlclod funds funds 2024 2024 Total 2025 2024 Notes Incomè from: Donalions and legacles Charflable aclivilles other trading aclivilie8 Investmenls 106,369 1,576 518 231 6.858 113,227 1,578 S18 231 81.602 7.821 89.423 30 256 30 256 Total Income 108.694 6.858 115,552 81,888 7,821 89.709 Expenditure on: Raising fvnd$ Charltable actlvitles 14,732 84,510 14.732 99,521 11,631 85,294 11,631 101,178 15,011 15,884 Total expendlture 99,242 15,011 114,253 96.925 15.884 112,809 Net Incomoll¢xpondltur&l and movement In funds 9.452 18.1531 1,299 {15,0371 18,0831 123.1001 Reconclllatlon of funds.. Fund balances 811 April 2024 65,732 27,318 93.050 80.769 35,381 116.150 Fund balance8 at 31 March 2025 75,184 19,165 94,349 fj5,732 27.318 93.050 The s¢Blemenl of financi818clivilies includes all gains and losses fecognised in Ihe year. All income and expendllurè derive from conlinLting acllvit169.

IMMUNODEFICIENCY UK BALANCE SHEET AS AT31 MARCH 2025 2025 2024 Notes Curront a¥89ts Debtors Cash al bank and in hand 13 1.019 104.413 6,671 100,682 105,432 107,353 Credltor8.' amounts f•lling dua wlthln ono year 14 111,0831 114,3031 Not curr8nt assets 94.349 93,050 Thè funds of th• ¢harlty R8slri¢led Income funds Unreslricled funds 16 17 19.165 75,184 2T,318 65,732 94.349 93,050 The financlal sl8lem6nls were approved by the Iruslees On 2￿a.112￿2fi..... ValeAi& &<dJerUhl' Ms V D Bri$se-Uhllg Chalr of Trust••8

IMMUNODEFICIENCY UK NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 Accountlng poll¢les Charlty Informatlon Immunodoli¢ionGy UK Is 8 iegislered Ch8ritabl8 In¢orporaled Organisallon ICIOI In England and Wal&s, established on 20 January 2021. 1.1 A¢¢out)tlng conventlon The financl81 slalements h8ve been prepared In accordance with lh6 chariws governlng document, the Charities Act 2011, FRS 102"The Financial Reporting Si8ndard appli¢abl8 in the UK 8nd Republic al Ireland. athd the Charities SORP "Accounling and Rèporting by Charities.. Sl8lèmenl ol Recommended Proclé¢e applicablg to ch8r4tsès preparing their accounts in accordJnce with Ihg Financial Reporting Standard pplicablg in the UK and Republic of Iraland IFRS 1021. The charity is a Publio Benefit Enlily os delin9d ty FRS 102. The chaTity has laken advanl8g8 of the provlslons in th8 SORP for charllies not to prepare a slalgmenl of ash Ilows. The financial statements arè prepared in slerllng, which is the functional curiency of Ihe charity. Monelary amounls in IhesB financial $1816ments are rounded lo the neafesl £. The financial slalemenls have been prepared under the historical cost ￿nventIon. The principal a￿OuntIng poliues adopted are sel out below. 1.2 Golng ¢onc•rn At the lime of approving the financi81 slalemgnls, the Irus166s havo a reasonab18 expeclalion Ihal the chorily has adequ81è resource8 to continu6 in operat￿n￿l exlslence lor th¢ loreseeabl& future. Thus lh8 trustees conllnuè io adopt Ihg going con¢8rn basi8 of a¢counling In préparing the finan¢i81 statèments. 1.3 Charltable fund Unreslricled funds ar6 available lor al the di8¢rellon of the Ifustegs in furth8ran¢o of their ¢haritable obleclives. Reslricted funds aro subject to $p8cific condSllons by donors or grantors as lo how they may be used. The purposes and usas ol the re81iicled lunds aro set gul in Ihe notes to Ihe Ilnan¢i81 slalemenls. 1.4 In¢omè Income is recognised when the charity is legally entitled lo11 after any performan¢0 conditions have been mel. the amounts can bo mo8sured reliably, and it is probabla that income will be ￿￿1ved. C8sh donations af8 recognised on r8eaipl. Other donaliDns are recognis8d once the charity has been notified of Ihg donalion, unless performan¢8 conditions require delerral ol the 8mounl. Income lax recoverabl8 in lation to donalions received under Gift Aid or deeds of covenant Is recognised al (he lime of the donation. Legacies are recognised on ieceipl or othe￿1$8 if the ¢h8rity has been notified of an Impondlng dislribulion. the amounl is known, and feceipl is expècted. If ihe amount 18 not k￿oWn. the legacy is Ir8818d as a conlingenl assel. 10

IMMUNODEFICIENCY UK NOTES TO THE FINANCIAL STATEMENTS (CONTINUED} FOR THE YEAR ENDED 31 MARCH 2025 Accountlng poll¢les 1.5 Expendlture Expenditure 18 racognised once Ihere is a legal or consiruclivè obllgallon lo Irdnsfer economic b8nèfll to 8 thlrd perty, it is probablo that a Iransler ol economi¢ benefiis wlll be requSred in settlement. and the amovnl of Ihe obligallon can be measured reliably. Expenditure is classified by adlvlly. Thg cosls of aach acliviEy are made up of the total ol direct ¢osl$ 8nd sh8r8d cosls. including 8UPPQrt ¢osls Involved in uRdart8king e&ch activity. Direct costs altrlbutable to a slng16 activity arè allocalod dlreclty lo that aclSvily. Shared costs which conlribule lo mor8 than one activity and suppoirt cost3 which are nol allribul8bl6 to a single activity are 8pportloned belween those ac15vities on a ba8ls conslstent with the use ol resources. Cenlr81 staff cosls are allocalfjd on Iho basis of lime sp?nt, and deprecialion oharge8 are allocaled on the portlon of lh¢ assel's use. 1.6 Cash and ¢a¥h Oqulvalènts Cash and cash equiv8l&n18 include cash in hand, d8posIts h81d al call wilh banks. other short-lerm Ilquld investments wiu) original malurilies ol three months or less, and bank overdrafts. Bank overdrafts are shown within borrowings in currgrnl liabililios. 1.7 Flnanclal Inslrumants The charity has elected lo apply the provisiorbs of Section 11 'Basic Financial Inslwments, and Section 12 'Olher Financial In81rum8nts Issues, ol FRS 102 to all of ils finan¢l81 Instrumenls. Financial Inslfumenls aré récognised In Ihg charills b818nce sh98t when the chaTIty be￿M¢S paty lo the contractual provisions of th8 Instrumenl. Flnandal assets and liabillll&s ore offsel. wlh the ng18mouftls presented In fhg finan¢lal slalemenls. when there is a legally 8nforceable right lo sel off the recogni5ed amounls and there is an Inler*lion lo settle on 8 nel basis or lo realise Ihe 8ss&t and sellle the liability 8imult8neously. Baslc flnanclal assets Bosi¢ financial as8els, which include deblor8 and ¢8sh and bank balances, ar8 In11181ty mèasured al Iransaclion pri¢0 Including trans8Qtlon ¢osts and gre subsequently ¢8rrled at amortised cost using th8 effe¢livo inleresl melhod unl88s the arrangement conslilules a financlng transaction, where the Iransa¢llon Is measured al the present valuo of Ihe lulure rècèipts diswuntgd al 8 market rate of Interest. Financial assets dassifted as receivable wilhin onts year are not gmMIs8d. Bas1¢ fln8n¢l81118bllltlas 8aslc financial liabililtes, Includin9 creditors an¢J bank loans are inilially recognlsed al Iransacllon price unless the arrangement constilutes a financing Iran8aclion, where Ihe debt inslrumenl is measured al the present value of Ihe future p8ymenlg discounled at a market ial8 of intere81. FiT)ancial liabilities classified as payable wlhln one year are not amortised. Debl Inslwmenls are SLFbsequenlly carriod al amortised ¢x>sl, uslng th& effecllve Interest rale method. TTade creditors are obligallons to pay lor goorls or services that have been acquired in the ordinary course of operations from suppliers. Amounls payable are classlfled as current118bllllles 11 paymenl is due wilhln one year or less. 11 nol. they are presented as non-curfenl liabllllles. Tiade creditors are recognised Initially al Iron5a¢lion price and subsequently measured at amortised cost using Ihe effe¢lSve interest mtslhod. DereGognAfAon of flnanclal Ilablllfles Flnanclal liablllUe$ are d8re¢ognis8d when the ch8rlly'$ contractual obllgailons exptte or are discharged or cancelled. 1.8 Rotlmment beneflls Payments to defined conlrlbullon rellremenl b8n8fil schemes are charged as an expensg as they fall duo.

IMMUNODEFICIENCY UK NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2025 Income from donatlon$ and18gacl8s Unreslrlcted R•$trlctod funds lund¥ 2025 2025 Total Unre$lrlctéd Restricted funds lund$ 2024 2024 Total 2025 2024 Donalions and gllts 106,369 fj,858 113.227 81.602 7.821 89,423 FUNDERS Below Is a breakdown of luThling recognisfd in income in the firkancial period lo 31st March 2025.. 2025 2024 Grifols Biolest Ipopi Renish8W The Hospital S8lurday Fund 4.278 2.700 2,080 500 4.115 500 2.000 TOTAL 6.858 7,800 In addSllon lo the above reslricled lunding. funds were received from.. CSL Behring.. £35,000 lo support advocacy proj8cts, awar&n&ss falsing. and Ihe provision of service8 for the immunts(l¢fi¢iency communlly. Takeda Ltd: £17,239 towards the geneTal Funnlng costs of Immunodeficiency UK. including a Contribution towards our adminislrallon and accounlancy costs, and lor Ihe p￿r¢h￿se ol Immunodeficiency UK logoed T-shirts and runnin9 vesls. Pharming: £12,324 lowards the geneial wnning cos18 01 Immunodeflclency UK, irKluding conlribullon loward5 our admlnislfation. websile. database. IT support. and subscription cosls. Jeans for Genos.. £T50 tOW8rds general running co81s. Non-monetary sltpport was also received., Ihls has not b98n includ8d in Ihe accounts as donat￿n5 and expendiluro 83 ills not posslble to consi5tenlly value the conlrfblrtlon r8c8lvad. D818ils of support ara given below.. Takeda- Involv8mgnt In Ihe'Number 17. campalgn raising awareness ol people living wilh a rare disease. 12-

IMMUNODEFICIENCY UK NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2025 In¢om8 from charitabl• a¢tlvltl8S Unr•$lrlctod funds 2025 Unrestrlcted funds 2024 Support Service Level Agreement Rech8rg8 in¢om& 1,576 Income from otheT tradlng actlvltlos Unrestrlcted Unrostrlcted funds fund¥ 2025 2024 Merchandlsè Income 518 Incom8 from Investments Unrestrlctod Unrastrlctod funds funds 2025 2024 Inleresl receivable 231 256 Exp•ndSlure on ralslng funds Unr•strlet8d Unrastrlctod funds funds 202S 2024 Fundrèlslng and publlclty Event places and merchandlse Other lundrai8lng cos18 Support costs 2,516 4,564 7,652 4,370 7.261 14,732 11,831 13

IMMUNODEFICIENCY UK NQTES TO THE FINANCIAL STATEMENYS ICONTINUEOI FOR THE YEAR ENDECI 31 MARCH 2025 EXp0ndH￿￿￿￿ ¢hiwttlbl• •¢tl¥1114A Olie¢i Ad¥oca¢y Erfu¢aUon Sthpport andial•lng w•r•n•Js Dlr•¢t Athocacy Edu¢all•n R•¥••Kh support arndr4l¥ing 2025 2029 2025 2025 2124 2024 2024 024 2024 Olr¢cl ¢0610 SundtlÈ$ 3,108 10,717 3.350 12.887 fj.1 250 3.9)7 15.272 4.159 17,857 2,f70 &iOD Grants 2.215 7.27Q 200 13,825 21.34$ 4.872 250 26.851 8bargof 1upport￿￿￿O¥4rO￿￿¢g ¢wl•14•• rtoit8] Supgtsrt 11.54Q 3.185 26.025 3.115 30,869 3,572 8,434 9,742 10.913 2.942 29,968 3,106 27 2.942 21.995 29.4eO 48.066 99,521 18.727 28.Q3e ,263 Artaly•l* byfrjnd un￿￿trict£d f￿hd Rèstheied lums 6.984 39.460 48.066 &4,510 16.442 2.285 27.20B 1,432 41,646 10.807 05,294 IS￿84 21.995 29A60 99,521 lQ,727 28.638 51.253

IMMUNODEFICIENCY UK NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2025 Support costs allo¢atgd to OGtlvltSes 2025 2024 Staff costs Subscriptions Travel and sub$l$l8nca IT and telephone Pos18ge and fuifilmenl Storage Gtsvernance costs 72,079 1,111 705 1,145 88 958 9,742 69.066 887 1,836 928 871 8.990 85,828 82.578 Analysgd botween: Fundraising Dlr8cI Support Advocacy Edu¢atlon and WaI￿n9 aw8ren&ss 7,652 14,725 29,210 34.241 7,261 13,855 28.388 33,074 85,828 82,578 2025 2024 Governance costs ¢omprl$g: Audll fe¢s Accourlancy Legal and prol8$8ion81 Sundrlos Bank charges 2,970 6,324 157 91 200 2,910 5,670 157 74 179 9,742 8.990 N•t movemgnt In funds 2025 2024 The nel movement in fvnds Is 8laled after chargln9llcrediting}'. Fees payable for the Independent ex#minallrn of thè charfly's fln8nclal slalements 2.970 2,910 10 Trustees No ¢xpgns&s (2024.. £55} were reimbursed lo any tIUStees12024-. 11 during tho year. 15

IMMUNODEFICIENCY UK NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2025 11 Employ895 Th8 average rnor)Ihly number of employees durfng the year wa$.. 2025 Number 2024 Number Employment Costs 2025 2024 Wages and salaries Social s¢curity costs Olhèr panslon ¢osts 64.847 2.693 4.539 62,353 2,349 4,364 72.079 69,066 The numbor ol employees whoso annual remungrallon was moTe Ihan £60,000 Is a$ follows: 2025 Number 2024 Number £60.000 to £70.(N)O R8muneratlon of k¥y managem•nt porsonnel The remuneralton of key management pernonnel was as follows.. 2025 2024 Aggregate wmponsalion 64.847 62,353 12 Taxatlon Thè charity ig axampl from taxation on ils activities because all ils income is applied for charitable purpose8. 13 Debtor¥ 2025 2024 Amounts falllng duè wlthln on• yèar: Trade debtors Prepayments and accrued incom8 1.019 6,672 1,019 6,671 16

IMMUNODEFICIENCY UK NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2025 14 Creditors: amounts falllng due wlthln one year 202S 2024 Other 18xallon and social 80¢tsrlty Trade crèditors Olhor credllors Accruals and defeired income 1,748 1,100 724 7.511 1,694 2.124 6,332 4,153 11.083 14.303 15 Retlr•m•nt ben?fit schomg8 2025 2024 Daflned contrlbutlon $¢h8mas Ch8rge lo prolll or loss In r8specl of defin8d contribution s¢hem¢s 4,539 4,364 16 Reslrlctèd funds Th8 re81riclod funds of Ihe charity ¢omprfso the unexpended balanc8s of donations and grants held ¢)n Irusl stsbjecl lo speclfic wndilions by donors as to how they may be used. At 1 Aprll 2024 Incomlng r•$ourc•s Resource¥ At 31 March èxpended 2025 BDoklots Helpline costs Digi181 camp8lgn & reprint of IPOPI booklets Mental health webinars P8ti6nt events and support gronts Travel costs The Hospllal S&lurday fL¢nd Monthly e-newslellei 3,800 1.217 787 16,648 2.692 174 2,000 11.5251 11,7171 12,1171 13,9001 11.3001 (1741 2,275 500 2,080 750 12.748 1,392 2.000 4.278 14,2781 27,318 6,858 15,0111 19.165 17-

IMMUNODEFICIENCY UK NOTES TO THE FINANCIAL STATEMENTS (CONTINUED) FOR THE YEAR ENDED 31 MARCH 2025 16 Resfrlcled fund$ Prevlou$ yèar: At 1 April 2023 Incomlng rasources Ro¥our¢gs At 31 Mar¢h expended 2024 Bookl&is Helpline costs Wgb511& Dlgilal campaign & reprlnl ol IPOPI b￿kIe15 Mental health webinars Pallent events and support grants APDS awareness proièet Tr8vel costs The Plospllal Saturday fund Monlhly o-newsletler Psychology project 4,497 3,717 1.229 424 16,648 2.692 6,000 174 16971 13,0001 11,2291 {3,3411 3,800 1.217 500 3.704 787 16,648 2.692 {6.0001 {4321 432 2.000 2.700 11,5151 174 2,000 12,7001 1,515 35,381 7.821 115.8841 27,318 The lund8 broughl forward reflect those accumulated by the Primary Immunodelicigncy IPIOI UK section of Gene People Ifomerly G8netic DisordeT8 UK) whl¢h ware transferred Inio Immunodeficiency UK when It becam8 118 own enllty fjffecllve from 1st April 2021. Those fund8 whl¢h ware resldcled al Ihal dale have bee Iransf¢rr¢d Inlo their own reslri¢led lunds wilhln thesg accounts. Oe8criplion of funds 8ooklets- Funding lo cover the co81 of prinlinu ¢opl88 of spedfic lnlomi8llon bookleis. Psychology Project - Fvndlng support, 8s part of a mulli-charity initiotive. for a clinical psychology position al Department ol Immunolo9y, Bimiingham Heartlands Hosplt81. This projact has finished and unspent funds were relurngd lo tho fund8r. Helpllne Trolnlng- Fundlng to support the tralning ol volunteers to man the lrnmunodèficiency UK helpline. Monlhly e-newsleller Support lor the publicallon ol a monthly e-newsletter for Immunodeficienty UK m8mbg18 covor4ng Aprfl 2023- December 2023. Webslte - Funds lor ihe development of a new website for Imrnunode14clency UK. Dlgllal campalgn 8nd r6prfnt of IPOPI malerSals - Reprint and dlsseminalion ol IPOPI educational maleriols and support for a digilal m8rk81ino ¢8mpalgn for Worfd Pl Week. M&nt81 health w6bin8is - Support lor improving the m8n181 health ol the immun¢)deficiency ￿mMunIty. Pallenl events and support grants - Support for pallenl events and palienl support grants. Activated P13K D&lla Syndrom8 - D8Yelopmenl ofpalienl slorle8 and APDS 1nfomial1c￿ for the website. Travel - funds lo cover Iravel lo specific evenis and confergnces. The Hospital Saturday fun¢f - Proviston of up lo d810, medically fevigwed 8ducation81 tjooklels for familles affectad by rare primary immune delciencles. 18-

IMMUNODEFICIENCY UK NOTES TO THE FINANCIAL STATEMENTS (CONTINVED) FOR THE YEAR ENDED 31 MARCH 2025 17 Unre$trletad funds The unreslricled funds of Ihe charity comprise the unexpgnded balances ol donations and grants which are not subject lo specific condillons by donors and grantors as to how they may be used. The8e includg de3ignalod funds which have been set aside out ol unrestri¢l$d funds by tha Imste8s foi specific purposes. At 1 Aprll 2024 Incomlng rosources Resourcos At 31 March expended 2025 General furid 65.732 1Q8.694 199,242} 75,184 Prevlou$ y•ar: Al l Aprll 2023 Incomlng re$ourc•s R•soure•$ At 31 March expended 2024 General fund 80,769 81.888 96.9251 65.732 18 Analysls of nBt assets betweon funds Unrgslrlcled fund5 2025 Rèstrlctod fund¥ 2025 Total 2025 At 31 March 2025.. Current asset￿(1[abl1lldeSI 75.184 19.165 94.349 75,184 19.165 94.349 Unrestrlcted fundy 2024 Reslrlcled fund 2024 Total 2024 At 31 March 2024: Curfenl 8gsotsllllabi111Sesl 65.732 27.318 93,050 6S,732 27,318 93,050 19 Rolated party Iransactlons There were no disclosable r8lat8d party trans8clions dijrlng Ihe year12024 - none). 19.