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2024-04-01-accounts

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1st April 2023-
31st March 2024
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Annual report & financial statements

supporting individuals and families affected by immunodeficiency

Find out more about our charity

www.immunodeficiencyuk.org

Contents

03 About Immunodeficiency UK

Trustees’ responsibilities and financial 06 overview

08 Our achievements at a glance 10 Living with immunodeficiency

Supporting the immunodeficiency 12 community 13 Our helpline services

Why we are needed: Currently in the UK

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

15 Booklet and information development

16 Raising awareness of immunodeficiency 17 Providing mental health support

Providing hardship grants and 18 medical devices

19 Our advocacy work

21 Supporting research

22 Our fundraisers

25 Our aims for the next year

8,000+

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

26 Financial statements

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. From 2013 to the launch of Immunodeficiency UK, PID UK operated as a division of Genetic Disorders UK (company registration number 07554771 and registered charity number 1141583).

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 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 relevant organisations to ensure that those affected by primary or secondary immunodeficiency have the knowledge needed to manage their condition effectively and 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, Benefits and Work, 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:

Our trustees

Dr Matthew Buckland – Chair Hannah Bruce Valerie Brisse-Uhlig

Diane Hammond Jane Shepard Tamara Moubazbaz

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) Alison Fox ( London) Stacey Garrity ( Manchester) Carolyn Grundy ( North 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, Manchester

Dr Claire Bethune , Consultant Immunologist, Derriford Hospital, Plymouth (retired 12-12-22) Dr Matthew Buckland (Chair), Consultant Immunologist, Great Ormond Street Hospital and Barts Health NHS Trust, London

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 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 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 in 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 2022 to 31 March 2023, the trustees met a total of 6 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 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 £89,709, compared with £130,269 for the financial year 2022-23. This year the expenditure was £112,809 compared with £116,426 for the financial year 2022-23.

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 2024 were £93,050 of which £27,318 related to restricted funds leaving £65,732 of unrestricted funds. These free reserves equate to nearly to 5.4 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 £12K per month).

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Chairman’s statement

The trustees present their report for the period 1 April 2023 to 31 March 2024 under the Charities Act 2011, together with the financial statements for that period. The financial statements comply with the Companies Act 2006, the charity’s governing document and the relevant Statement of Recommended Practice (the Charities SORP [FRS 102]).

As I reflect on the past year at Immunodeficiency UK, I am filled with both pride and gratitude for the incredible progress made in supporting individuals and their families living with primary and secondary immunodeficiency. Our mission to improve diagnosis, care, and quality of life for those affected by immunodeficiency continues to drive every aspect of our work, and this year has seen significant strides in all areas of our mission.

We have expanded our support, offering ever more resources to individuals and families. Our partnerships with healthcare professionals and other organisations, have grown stronger, enabling us to advocate for a more holistic and coordinated approach to care. The increase in public awareness and education campaigns have brought greater understanding of immunodeficiency to both the medical community and the wider public.

This year also saw a considerable increase in support for research and advocacy, with a focus on improving access to treatments and pushing for better policy changes that impact those living with immunodeficiencies. Our efforts to ensure that no one feels isolated in their journey have resulted in growing engagement from both the community and donors.

None of this would be possible without the commitment of the staff, volunteers, and supporters of Immunodeficiency UK. I am deeply grateful for their dedication and passion in advancing our mission. We look ahead to the coming year with optimism, knowing that together we can continue to make a meaningful difference to the lives of those affected by immunodeficiency.

Thank you for your ongoing support.

Dr Matthew Buckland Chair of Trustees

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Our achievements at a glance

260+

people were supported through our phone and email helpline service.

4,200+

information booklets sent to immunology centres and individuals.

We launched our new website in November 2023.

We received:

36,618 Summer Highlight pageviews; 10,113 visitors, with 2,647 information booklet downloads.

12 newsletters were sent to our members keeping them updated on research, treatments, our activities and fundraising.

Launched new booklet on immunoglobulin therapy for younger patients and expanded our website content.

Nine hardship grants were awarded to individuals to help with the financial strain of accessing healthcare.

Our members' mental health challenges were addressed through informative webinars, providing strategies and support to help maintain good mental health throughout the year.

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Our achievements at a glance

We advocated for the immunodeficiency community through consultations and partnerships with other charities to emphasise the needs of immunocompromised individuals.

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Summer Highlight
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We raised awareness of immunodeficiency and their treatments through campaigns and people stories.

Supporting research – we awarded a grant, helping research the impact of an immunodeficiency diagnosis on psychological health.

Our Facebook page reached 26,856 people, we boosted our X followers to 1,861, and our Instagram account now has 504 followers.

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Living with immunodeficiency

Lucie’s story about secondary immunodeficiency

Lucie was diagnosed with secondary immunodeficiency following a course of chemotherapy to treat lymphoma, a blood cancer.

After successful treatment of her cancer, Lucie spent the next two years constantly unwell, with extreme fatigue, repeated infections and taking numerous courses of antibiotics. She reported the symptoms at her clinic appointments, but the doctors were not concerned as there were no signs of the lymphoma returning and her blood counts appeared normal.

Left very confused as to why she was feeling so unwell all the time with no obvious explanation, she demanded answers at a haematology appointment and, finally, a doctor tested her immunoglobulin levels.

The blood tests showed that her immunoglobulin levels were extremely low. She discovered that she had hypogammaglobulinemia. She was put on a course of daily antibiotics and underwent further testing to assess her antibody responses. The tests confirmed that she needed to start immunoglobulin replacement therapy.

She chose to have subcutaneous immunoglobulin therapy because it suits her lifestyle and gives her more freedom and control over her condition.

Lucie says ‘Being diagnosed with secondary immunodeficiency has been lifechanging for me. Since starting treatment, I have more energy and don’t feel so ill and drained all the time. The infusion treatments were a little daunting at first, but now they are something on my weekly ‘to-do list’ that I can fit in around my lifestyle. ‘

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Living with immunodeficiency

Arabella’s story about APDS

Shared by her mum, Tamsin

Arabella was diagnosed aged 8 with activated PI3Kδ syndrome (APDS), a rare condition which involves both immune deficiency and immune dysregulation.

APDS can cause lymphoma and they had a horrible scare of this in 2022. The family are currently trying to find a donor for a bone marrow transplant to completely cure Arabella’s condition, but they are yet to find a match.

Arabella is a true fighter and an inspiration to our family and friends. Our aim is to raise as much awareness of APDS as we can, to support other families in the same situation.

When Arabella was born, she was a healthy 7lb baby with no health issues. She thrived until the age of one, when she developed what her mother Tamsin thought was a nasty chest infection. It lasted for seven long years.

Her condition affects her lungs, mostly causing bronchiectasis and a lung collapse.

It also affects her sinuses, bowels, bladder, eyes and has caused hearing loss and dysphagia (difficulty swallowing).

They were frequent visitors to their local hospital. Then, one day, they saw a consultant at their local hospital who referred Arabella to Great Ormond Street Hospital. They then found out that Arabella has activated P13K delta syndrome, also known as APDS.

Arabella is undergoing immunoglobulin replacement therapy and intravenous medications at home, which have improved her infection rates massively.

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Supporting the immunodeficiency community

Over the past year, we concentrated on five key areas:

Our e-newsletters

We produced monthly e-newsletters that shared community news, research findings, latest developments in treatments, fundraising activities and opportunities for clinical trial involvement, including the PROTECT-V and STRAVINSKY COVID-19 studies. The average open rate of the newsletters was 49.6% (range 43.9% to 54.7%). 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).

49.6% open rate

8.98% click-through rate

The monthly newsletter is excellent and as my sole source of information, very much appreciated, as is knowing that I can ask any questions at any time and get as comprehensive an answer as possible.

Feedback from a newsletter recipient

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Our helpline services

The demand for our online and telephone helpline services remained high. In this period, we received 261 new enquiries. We were there as a listening ear and a provider of trusted information, signposting to services and dealing with issues relating to diagnosis, access to treatments and care, benefit entitlement and employment-related issues.

261

Number of new enquiries

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Number of recontact enquiries

‘Thank you so very much for your extremely helpful advice regarding my recent enquiry about possible immune deficiencies. I will certainly speak to my GP and try and get a referral to an Immunologist to see if this is something that finally can be diagnosed’. Caroline, who is suffering from repeated, recurrent infections.

340

Emails sent

Support offered

New enquiries

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Number of queries
200 Phone &
Email Phone only
22
18
150
Professional
40
100
Enquiry
method
50
Enquirer
0
Email
220
Family member/patient
221
Emotional SupportDiagnosisTreatmentWork related BenefitsSignpostingAccess to healthcareCOVID-19 Vaccine / access to LFTsAdvocacyInsurance
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Jane, mother to a child with APCED.

Thank you so much for your speedy response, I have used your site for my son’s condition since his diagnosis last year, it is such a relief to be able to understand what is going on with his condition and you have been a great help.

Matilda, who was seeking information on her condition.

Many thanks for your response to my questions about Selective IgM deficiency. That's very helpful of you, and useful to understand what the usual approach to treatment/management is.

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Launch of a new website

In November 2023, we launched a redesigned website to support patients, their families, and healthcare professionals with information about primary and secondary immunodeficiency.

The platform offers clear, accessible information covering all aspects of living with an immunodeficiency. It now incorporates a hub for medical professionals which includes in-depth guidance on diagnosing, treating and managing immunodeficiency. There are downloadable clinic posters, and portals for ordering our educational booklets for clinics and applying for hardship grants for patients in need of financial support with the costs of accessing healthcare.

The site has enhanced user experience with intuitive navigation, a mobile-friendly design, accessibility features including translation and an improved search function. The website hosts over 70 downloadable booklets, attracting users from over 130 countries, including Australia, Canada and the USA.

Top downloaded booklets

Keeping well and healthy when you have a PID

Secondary immunodeficiency

Primary immunodeficiency – the basics

Subcutaneous immunoglobulin (SCIG) infusions – a practical guide for patients

Antibiotics and PID

36,618 pageviews

10,113 unique visitors

2,647 booklet downloads

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Booklet and information development

With the help of funding support from the Hospital Saturday Fund we also expanded our educational materials in response to community and specialist needs. Collaborating with immunology experts and patient representatives from renowned hospitals, we created a new booklet: "Immunoglobulin replacement: a guide for younger children".

This colourful, reassuring publication features photos of children undergoing treatment, fostering a sense of shared experience.

We also began updating condition-specific booklets covering ten rare primary immunodeficiencies, ensuring alignment with current knowledge and treatment guidelines. These will be delivered in 24/25.

Development of new website content

To address helpline enquiries, we developed online resources on:

The transition to Living with spleen Integrated Care Boards issues or postin England and its splenectomy potential impact

Guidance on workplace protection under the Equality Act 2010

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Raising awareness of immunodeficiency

Sharing experiences

When living with or caring for a person with an immunodeficiency, sharing experiences can be a lifeline. We know that at diagnosis, it is common for people to struggle to come to terms with living with a lifelong condition and its implications. Thanks to our wonderful contributors, we created five new people stories giving a first-person perspective of living with these conditions. These were highlighted in our newsletters and on social media.

Here Mitch shares his experience of diagnosis for the primary immunodeficiency common variable immunodeficiency (CVID):

Mitch was diagnosed with CVID aged 33.

Mitch had symptoms of primary immunodeficiency since childhood, with repeated chest and ear infections, sinus problems, and bouts of pneumonia. However, it wasn’t until he developed bronchiectasis, a chronic lung condition, that his immunoglobulin levels were checked and found to be extremely low. Following further tests, he was diagnosed with CVID and immediately put on immunoglobulin therapy.

‘To say I was nervous about my first immunoglobulin replacement therapy session is an understatement. The staff explained the whole procedure, which mirrored the information provided by Immunodeficiency UK. Their website explains the risks (which are minimal) but, more importantly, the benefits of this treatment.’

World PI Week 2023

Rare Disease Day 2024

Immunodeficiency UK launched a global campaign during World Primary Immunodeficiency (PI) Week, reaching over 5,800 people through social media. Our campaign shared patient stories about the challenges faced by people and treatment options for those living with primary immunodeficiency.

Rare Disease Day is a global event aimed at raising awareness about rare diseases and their impact on patients. Immunodeficiency UK participated in a social media campaign to increase public awareness, encourage decision-makers to address the needs of those living with rare diseases, and collaborate on improving rare disease care and support.

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reach c5,800 people

113 post clicks

501 post clicks

reach c1,300 people

Providing mental health support

Understanding the mental health impact of living with immunodeficiency

To better understand the mental health impact of living with primary or secondary immunodeficiency on patients and their carers, we conducted a community survey. The results helped us assess the level of need and identify focus areas for future mental health support initiatives.

Key findings from our mental health survey

Key factors were:

88% of respondents said their condition had a negative impact on their mental health

Extreme fatigue Anxiety Dealing with a diagnosis Concerns about the future

74% of respondents had not been 80% of respondents expressed a offered or directed to mental desire for mental health support health support services from Immunodeficiency UK

With our funding and insight, we collaborated with the mental health charity RareMinds to deliver mental health webinars and workshops tailored to our community's needs.

Given the positive outcomes and benefits, we will continue this collaboration to offer other mental health support programmes in 2024/25.

88% of participants would recommend the support given to others

I have completed the 8-week programme and can say it is fantastic. It has helped me with many coping strategies for pain and anxiety, fear and general pacing. I still have a very lot to learn and practice but I believe it is something to work on.

An attendee of the 8-week mindfulness course

Great session, really enjoyed listening to others experiences of living with a chronic condition and how it has impacted them personally and professionally.

A ‘Dealing with Diagnosis’ webinar attendee

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Providing hardship grants and medical devices

Immunodeficiency UK continued its hardship grant programme, offering £100 grants to individuals and families struggling to cover essential healthcare expenses. Immunology centres identify and refer eligible recipients. During the 23/24 year, nine grants were awarded.

I have to travel to London annually for ongoing research

related to my stem cell This will really help with therapy, however it's an extra travelling costs especially as I'll expense I can't really afford be travelling to London from especially with a newborn son. Norwich quite a bit for the To just have some financial bone marrow transplant. pressures alleviated helps Hardship grant recipient reduce the stress. Hardship grant recipient

We launched a new support programme providing free 'Buzzy Shot' pain relief devices to children with immunodeficiency, aiming to 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 ‘Buzzy Shot’ devices to six families.

The Buzzy Shot uses cold and vibration to distract away from the pain of needles.

‘The weekly subcutaneous immunoglobulin

infusions for their 6-year-old boy were previously very stressful for the whole family as he got so upset and is needle phobic. The Buzzy has made a massive difference. He loves it! And says it is no longer sore getting the needle in.’

Feedback from a nurse of a family who received a Buzzy.

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Our advocacy work

Promoting plasma donation

We partnered with NHS Blood and Transplant (NHSBT) to raise awareness about the critical importance of plasma donation as a source of immunoglobulin (IG) therapy, an essential treatment for over 8,000 people affected by immunodeficiency.

We used social media to share patient stories about the benefits of IG therapy and cohosted a Plasma Awareness Parliamentary Reception at the House of Commons, attracting 50 MPs. Our CEO also spoke at the opening of a new plasma collection centre in Birmingham.

Pictured: Dr Susan Walsh, Immunodeficiency UK CEO (third from the right) with a group of immunodeficiency patients who attended the House of Commons to share their experiences.

Patient experience survey

In collaboration with Takeda UK Ltd, we conducted an online survey between July and September 2023 to better understand the experiences of patients with immunodeficiency. The results will inform a report with recommendations for NHS leaders and medical professional organisations, to be published in autumn 2024.

Supporting genetic testing

We collaborated with Genetic Alliance UK to successfully advocate for licensing preimplantation genetic testing for the rare condition Schimke immuno-osseous dysplasia.

Advocating for access to treatments

We submitted a letter to the National Institute for Health and Care Excellence (NICE), co-signed by the British Society for Immunology Clinical Immunology Professional Network (BSI-CIPN), challenging the assessment route for Leniolisib as a treatment for rare primary immunodeficiency APDS.

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Our advocacy work

We submitted stakeholder responses to the following consultations:

NHS commissioning policy on Abatacept for autoimmune complications of primary immunodeficiency

Welsh Health Specialised Services Committee's consultation on immunology services

Statutory pricing scheme consultation supporting the proposal to remove Voluntary Scheme for Branded Medicine Pricing and Access (VPAS) costs from plasma products

The continuing impact of COVID-19

The COVID-19 pandemic continued to have an impact on our community, with 10% still shielding and 20% having low confidence in socialising.

Immunodeficiency UK, part of the high-risk stakeholder coalition, met with NHS England and the UK Health Security Agency (UKHSA) to discuss infection rates, emerging variants, and access to medicines, vaccination programmes and free lateral flow tests.

Stakeholders co-signed letters and we provided case studies to UKHSA, raising concerns about the paused Office for National Statistics Coronavirus Infection Survey. This survey provided vulnerable people with the knowledge needed to make informed decisions regarding the risk of contracting COVID-19 through social mixing.

A letter was sent to the Secretary of State for Health and Social Care and the Prime Minister addressing the lack of timely information on COVID-19 treatment access via Integrated Care Boards and the ongoing isolation of immunocompromised individuals.

At the request of the Scottish Government, Immunodeficiency UK submitted a response to the Scottish COVID-19 Inquiry. Our response helped the Inquiry team to understand the impacts of the COVID-19 pandemic on our organisation and the members we represent.

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Supporting research

Research Grant Award

We awarded £1,560 to support the study: "Impact of a diagnosis of primary or secondary immunodeficiency on psychological health in the United Kingdom". The research involves patients from seven immunology centres and will help enhance the understanding of patient needs in quality of life and mental health to help inform patient-centred care practices and supporting evidence-based decision making in immunodeficiency care.

The study is led by Dr Mari Campbell, Consultant Clinical Psychologist, Royal Free London NHS Foundation Trust (pictured top right) and Dr Philip Bright, Immunology Consultant, North Bristol Hospital Trust (pictured bottom right).

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.

Our involvement in these research initiatives underscores our commitment to advancing scientific understanding and improving care for those affected by immunodeficiency.

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Our incredible fundraisers

A huge thank you to Natassia and Matthew, who raised over £5,100 for Immunodeficiency UK

Natassia and Matthew raised a huge £5,100 to support the charity's vital work. Their motivation came from a personal place - their son Brooklyn was diagnosed at just 8 months old with X-Linked CD40 Ligand Deficiency, also known as Hyper IgM Syndrome.

Natassia and Matthew were determined to raise funds and awareness for all those living with an immunodeficiency, and the constant worries that come with chronic illness. As Natassia shared, " The articles and support pages provided by Immunodeficiency UK were invaluable to us after Brooklyn's diagnosis, in helping us understand more about his condition."

The couple, supported by their family and close friends, undertook a wide range of fundraising activities. These included a 5km charity walk, two charity football matches, a CrossFit challenge, the grueling Goggins challenge (running 4 miles every 4 hours for 48 hours), and a BBQ and bake sale. Immunodeficiency UK is truly thankful for the tireless efforts of Natassia, Matthew, and their loved ones. Their commitment to supporting the charity and raising awareness of immunodeficiency is remarkable.

£5,100 was raised

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Our incredible fundraisers

Dedicated Fundraiser Scales New Heights for Immunodeficiency UK

Rachael Stephens (pictured on the right), a new member from Cornwall, raised an outstanding £1,225 for the charity after being diagnosed with common variable immunodeficiency (CVID) in early 2023.

Rachael, a youth worker and mental health practitioner, took on the ambitious challenge of climbing three Scottish mountains, including Ben Nevis, the highest peak in the United Kingdom. Rachael uses hiking and other activities to support the mental health of the people she works with.

After nearly a decade of developing various symptoms, Rachael became gravely ill with an infection just before Christmas 2022, leading to a period of extensive testing and medical appointments. She was eventually referred to an immunologist, who diagnosed her condition.

Undaunted, Rachael successfully completed her mountaineering challenge at the end of September 2023, surpassing her initial fundraising goal. Immunodeficiency UK is incredibly inspired by Rachael's courageous effort and for her generous support of the charity.

£1,225 was raised

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Our incredible fundraisers

Katy Takes the Plunge for Immunodeficiency UK

Immunodeficiency UK couldn’t be more thankful to Katy, who undertook a skydiving challenge to raise funds for the charity.

In 2017, Katy lost her uncle to CVID, a serious primary immunodeficiency that he had battled for most of his life. Katy's father also lives with CVID, and throughout her life, Katy has witnessed him struggle with recurrent infections and the need for ongoing medication.

Determined to make a difference, Katy decided to take the plunge, quite literally, by participating in a skydive to raise money for Immunodeficiency UK.

Through her ambitious fundraising challenge, Katy raised a remarkable £2,295.

£28,663

was raised through public donations

2422

Thank you to all our members, fundraisers, donors, volunteers, trustees, sponsors and members of our medical and patient representative panel for their continued support.

We couldn’t do what we do without you.

To make a donation, please go to http://www.immunodeficiencyuk.org/donate

Our aims for the next year

We will continue to:

www.immunodeficiencyuk.org hello@immunodeficiencyuk.org 0800 987 8986

www.immunodeficiencyuk.org

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IMUNODEFICIENCY UK Repoi't of tbe Ti'llstees for the y￿. euded 31 Maiyh 2024 The thisieeg pregeni their reporr with the financiil giaiemenis of the ehlriry for the year ended 31 Mireh 2024. The rnJ$ie¢$ hav¢ adopi¢d ihe PTovisions of A¢¢ounting and R¢portsng by Charities.. Siai¢m¢ni of Retomn)¢nd￿ Pracii¢e apphcabl¢ lo (harities pr¢paring th¢ir accoiint5 in ac¢ordanc¢ with lh¢ Finducial R¢portin8 Stsudard applicable in the UK a[￿ Republic ollreland IFRS 102) (effective l Jallllary 20191. OBJECTIITS ACTIVITIES ObJerth-e5 W¢ work on b¢half of p¢opl¢ aff¢ct¢d by priinary or Kcondary inununod¢fici¢ncy in th¢ UK and th¢ir famih'¢s. Our Inission is to ivork with patients, healthcare professionals and Televant Ofganisatious to eusiire that those aff¢cted by PTilI]ary 01 Secondary iniiiiun(MlefKiency hav¢ th¢ knoivledge ue¢ded to nwiiage their colldition eff¢cUvely. W¢ aiin to ensiire that PAtieuts' health needs hre widersiood ￿ld addressed by ihose involved in healthcbre rn)licy and delivery. We are dedicated to helping people affected by in)mUlllKleficiency throiigh our inforniation, peei supwrt and advocacy activities. at]d to supwrting and emp￿verU]g people to uiiders¢and aiid 11]Jnage theii condition. We make il easy for our Inen)bers to participate ui research trials to further the search for treatiiieiits at]d a ciwe. Our objectivey, as sel out in our Manorandum and Article5, are". - The adV￿iCe1llcnl of healt]i allil the relief of people affected by primary ot secondary immunodeficiency and their famiknes aiid people respoiisible for dieir welfare. iiicliidiiig.. o by pwjviding assislance. advice or giiidance in relation to managing their conditson and improving the diagnosis of these condiiions. Iheir ireaaneni and the quality of life of rhose affected o by promoiing awareness and understftndin8 of primary and secondary immiimdeficiency within the Beneral piiblic J Inedical profession in order ro betier iindersiand ihese coi1diiio￿ and their iinpaci o by providing a helpline setvice. evems and praciical help and advice. To encoiira8e and support research inio the cal￿eS. Ireattnenrs. prevenlioo and curv for primary aud secondary immi￿0deficLtllCy. and io Niblish the iisefiil results of thai research. Publlc btneflt In seitiii8 objectives and planning aciiviiies. the thisiees have given due cojsideraiion lo general 8uidance published by he Chariry Comn)isgion r¢iating to ￿1b]le b¢nefir. in¢luding th¢ ￿LId￿n¢¢'PubknC Ixn¢fii'. J charity IPB21'. Repre5eDtAtion To help li1￿1111t0defLCllenCy UK in lis work we are a member of several umbrella groups. including Generic Allicince UK. Gene Peopk, Ilie Specialised Healthcare Alli&ice. Beiiefiig ￿)d Work and the NaDooAI Cow)¢il for Volui)iary Oryanisauons. In)n)iuiodefici¢ncy UK is th¢ UK nfiiional nieiMb¢r of the Intemation¥l Patieni Org8ni$auon for Primary tn)niunod¢fici¢nci¢s IIPOPII. W¢ ar¢ r¢gist¢r¢d ivith tli¢ FundTaisiDg Regiilator. The CEO of Imn)w)odefLciency is die patient represeiitatile on NHS EngI￿ld'S Iiewborn 5ereening oversiglil ¢onllniti¢e for 5¢i¢r¢ combined In￿￿u￿(￿lef1Ci¢llCY ISCIDI at)d NHS scotla1￿,$ Nalioiial Pla51118 Pr(xlii¢i$ Expen Advisory GTQllP INPPEAGI. Sli¢ 15 als(Tr th¢ palicnt i¢prcs¢ntativ¢ on the Hapl(fv4kids ¢hiii¢al trial. which ain15 to improve haploid¢ntical donor stem ¢ell tronsplant out(Tr￿¢s for cluldreu aud adolescents with iminunodeficiency. Page I

[￿lUF40DEF1CIENCy iJK Rtpoi-t of the Tiwstee$ (or Ihe year ended 31 Mai'rh 2024 ACHIEITIIENT PERFOMLLNCE Oui. Iwlpllne seiTrke 4nd othei. Suppoil 8rd￿lIeS The deinaiid for online and telephone helpline seThryces reniained high in this ￿rIod.. Ive received 261 new enquiTie5 1252 in ?02J? 231. We were there as a listening ear and a Provider of trusted infornution, signw>s1ing to sern'ic¢s and dealing with issues reioling to th'ognosis. illsurauce. access to treatiuellts ￿ld care. benefit entitiemellt at eniployment-re]ateil issues. Tai per cenl of enquiries were related to COVLD-19 support. down ftoni 29¢/• in 2022123, with a sliift froni eiiquiries aEou¢ the healili risks of COVID-19 to infoniialion al￿ problems concerning access lo vaccines. anliviral medicines and free lateral flow lests. En response to the cost-of-living crisis that has pul pressure on many households, financial situaiion. we continiied our hardship graJ)t sclieii)e. On referrnl from immunology centres. grajiis of £IIX> are given to help indii'iduals aiid fan)ilies who iiiiglit oilienvise siniggle with travel costs io access healilicare for Iheniselves or their child. We aii'arded nitie siich granrs during this reporting period. As part of our comn)illnellt to improvin8 the healthcare experience for children with immutr)deficiency, we sianed to prOV￿e families wilh free Shot, paill relief devices. These devices reduce ihe fear and ihe pain associared with nttdle insenion for blo￿ iesis and for cnicial iinniiinoglobuliii Iherapy Ihai keeps cl)Jldren free froni infeciion. Available by refeml Irom a niedical professionaL The devices are inrended io make procediires involi'ing needles as con)fortable as possible and avoid the onsei of nttdle phobia. We provided six families with ￿l￿zY St]oi' devices in fhi% reporting pffi(Ml. L¥lentAI hfAltli supporl Di$Appoiniingly. the niii¢h-vakied ¢lini¢al p$ycliologisr service for iimiiunology Patient$ ai H¢anlAnds Hospiial And e¢n Elizabeth Hospital Birniinghani, wl)icli ive ivere helping ￿ 5UPPQrt as part of a coalilion of charit1¢5. ¢aille to all end. This wa5 due to a unilaleial decision by Ilie Binningliati) ￿ld Soliliull Menthl Healih NHS Foiilldjtion Tw5t lo chaiige the existing Service mod¢l, 1]￿kil1g il l¢x> expensive for ¢)ur coakntion lo support. We ren)ain coinniilted io higi)ligliting die shortage of psychology supwrt services 4s an iinwrtaiit adjiiiict to cliiiical iminiwlogy care. We carried ￿11 a mental health survey of our comniiinity. ¢0 better l￿derStand the impact of a diagnosis and li?ing with a prin)ary or seco]￿ary i11￿]Ull0dCficienCY oil the iiieiital healtli of tliose direcily affecied a￿1 Iheir carers. The Survey a150 helped Immunodeficiency UK to estsblish the extent of need and identify topics for menthl health support prograii]nies. We received 65 siwvey responses. On]y 120/0 of respondenrs indicated that Their condiiion had no impaci on iheir mental health. Fifty-six per cent of respondenis reported Ihal a dIa￿loSiS of in)miinodeficiency or being a carer negaiively impacted on their niental healih either a loi or ii)odeiaiely. Excessive faiigie. anxiety. dealitig with a diagnosis at iincenainry ￿]d worries aboui the fullire ivere reponed io have a significani iinpaci on Inental healih. Ivith 74Q/y of reswjndents repDnin8 ihai They had not been offered or signposied to n)ental healrh support services. incliidin8 counselling.'psychology or peer siipport. Eighry per ceni of respondenis reported thai they ivanied Immunodeficiency UK 10 offer ￿rgeted menial healili Sup￿rt. Responding ro Ihis ut]me¢ need. we worked with Ihe charity Rareminds, which advocaies for. and provides. specialist i))eiithl hecilih supwn for the rare disecise con)muniry. Rareminds delivered tailored menial health support webinars and worksknps with fi]ndin8 fiDm ImmunodefKiency UK. Durin8 the ￿riod. spttialisr facdiraied webinars were delivered on dealin8 with dia8zwsis and the iise of tnind￿]￿esS io rediice paiJL aoxiety and fatigiie. An eigh¢-week iitmiersive course enabled particip&)t5 to fi￿ller explore and learn mllidfuiness teehiiiqiies. A totsl of 44 people look part ll) these evenis. with 880/0 per ceili of participants recoilliiiending the $upp)n be offered 10 others. Following the suc¢e5$ and r¢poTted benefils brought to those involv¢d. we will continue tt) work with Rareminds. lo provKle tyilor¢d mental health SUPPQTt progrwllmes in 2024125. Page 2

[m￿lUF10DEF1CIENCy iJK Repoi-t of the Tiwstee$ (or Ihe year ended 31 Mai'rh 2024 InforJnAtlon developtDent And dlssetthatlo We produced n)onihiy e-newslenei$ thai $hared contsnunity news. research findings, laksi developments in treaiments, fvndrdising activities and opFrf)rluiii¢ies for clinical trial involvement, including the PROTECT-V and STIL4vfNSKY COVID-19 sttidies. The overdge open rate of the llewsletters ivas 49.6D/d Irange 43.9Q/ts to 54.7V•l. These figures are ab)ve the averdge rate of 28.6Q/ty Quoted for non-profit cominunications Isource.. NonProfit Tech for fjo(Kl.. hTlps.'Ilwww.nptechforgood.con￿I01-beS1-pra¢lICC￿Cma1I-n￿ket1ng-statsS1l¢S-fOr-nOnpr0fLt￿1 We highlighted our chariws services and Mat¢rIa￿ to in]miinology medical prof¢ssionab throu8h two targeted ]nai]ings. W¢ had a proniotional stat]d at tlie tminunology at]d All¢rgy Nursing Group conf¢reuc¢ lield in Cardiff. Throiigh our on-den)and order $ervi¢e for medi¢al profe$siono1$, we provided over 4.(Y)3 trA)okiei$ io siipwjrt patien1$ ai inununolo8y centres. We also distri￿7￿￿ 136 of our tx)okie15 direcuy to newty dia8mosed patients or ihose navigaling their treatment pathway. L*un¢h Of i Theb51te tn Nov¢mb¢r 2023. we laui)ch¢d a r¢d¢sign¢d web$it¢. The n¢w platfomi aims to $uppTrrt and ¢mpoiv¢r patients aud families by providillg clear. acee5sibl¢ infomiation rtboiit priinary and secondary in￿linoderJClencY for ih05e directly Affected. Iheir faiiiily n)eitsbers and ¢&r¢rs. Tlie 1veb$i￿ incorporate5 2 Separate liub for healthcAre prof¢5sioiials, Ivluch con¢au)s resoiiT¢e$ thai they can lis¢ 10 $upport their patients. These resources in¢lude e8$ily downioadAbk ¢lini¢ po$kn io raise awarene$s abolit imniuiiodeficiency. #n order fomi for patient re$our¢es, and doivnloadabl¢ ix)oklets. specifically ainied al medical profes5ioiipls. which provide in-deptli guidance on treating palients wilh in]mUnodef￿1ellcy conditions. The r¢d¢signed websi1¢ offers i¢¢essibihiy I)n￿lage translation fearttr¢$ io make it as in¢lusive as possible. 1¢ ha9 an iniproved search A￿c￿Oi1 to alloiv >isit¢)rs to a¢C¢55 the inforniatson they need quickly and Ca5￿Y. Tlie sile hosts library of over 70 dowl￿oadabL¢ b¢y)k]ets that piovide in-depth uudetslallding of inunuiiodeficiency condilions and Telaled tOPlC5. Import)nily. w¢ are now able to mea$iw¢ the 115¢ of thir w¢bsite iising G(x)8le Analytics. During the reportin8 period. the websile attracted users froiii ¢)veT 130 c¢)untTies. in¢ludiiig the UK, USA, A115tralia and Caiiada. li received 36,618 pagevieivs, 10, I IJ lin￿[1¢ visitor5 ￿ld 2.(47 bo(Trkiels ii'ere d￿Vill0￿ded. The t&￿k1¢(S IIW5t frequently dowiiloaded were 'Keepiiig ivell and healthy iv1￿￿ yoii haN'e a PID,, 'Secoiidary iilln)iiiiodeficiencg, Priiiiary in)inui1￿Crl(lenCY the basic5', 'Subcutaneous infiisions of in)zniii)oglolxiliii a praclical ￿lIde for pa¢iei)Is' and '￿ilIbl9ts¢s and Immunodef￿iency'. DeVelop￿ent of Infoiiualloll leaflets and T<ebslle ronteut We ¢oniinued to expand our rn)rrfolio of leafleis. res]xtrnditi8 to ihe need% expressed by the ¢on￿￿￿nity and immunology spwialists. W¢ worked in ¢(Trllaboration witli iinn)unology consultants, clinical nurse 5pecialist$ patieiil representalive5 frwii Grea¢ Oriiiond Street pnd Ihe Great North Childr¢i)'s H05Pital to develop a new booklel, 'Iillniuiioglobiilin replacenienl.. a for youiigeT cliiidren.. Tlii5 booklet pre5¢nts key infoniialioi) iii a rea3511ring, Co]￿1rfill and attractive fomut, and featutes phot05 of young children receiving tre¥4lmenl, to give a sense of shared ¢xp¢rienc¢. Through ihis working gT(xip. we 51Jrted to review the ¢onient of condilion-gpecifi¢ iM)oklets that cover extremely Tare prinwry inu]iunod¢fKi¢n¢i¢s. We wanl ttTr ewiire that ¢h¢ infom)ation 15 llp to dpt¢ wilh Cilrreni knowkdge at management and trealment guidelines. Respoiiding to inforination i¢que5ts rff¢ived i1￿0V8h our help￿11¢. w¢ d¢vel(Trp¢d online Infom)alion on lik'iiig with spl¢¢n probl¢in5 or withoul a 5pl¢¢i) ￿ld on th¢ d¢N'olv¢inait ol h¢althcarc in England to Inl¢grai¢d CaT¢ Boards IICBS) and J￿hat it ni¢ans for patsents. W¢ also proiryded infollnatiou to ¢mpoiver th¢ cOm￿l￿]ty abolit legal protection against discrimination in the w0￿p1￿ce under the Equality Art 2010. In lh¢ r¢wrtiiig p¢riod there wa5 a 5ignificanl cliange in Eiig]and on how io access COVtD tr¢atzn¢nts lantsvira]sl for high-ri5k groups of pwpl¢ witlun our convni￿lry who t¢st positiv¢ for COVID-19. Ac¢¢s5 arrang¢tn¢nts transl¢rr¢d frotn a centrdlised COVID Medicines Delivery Unit ICMDUI to indivith]al ICBS, with variations the wechanisEn of acce$5 for those in iieed acr95s the 42 different ICBS. This cliaoge required wore bespoke siguposting., therefore. we developed a ne￿ ivebpage devoi¢d to infonnalion on COVID-19 Inedicines, in¢0￿0rating the conlact details for each ICB. Thi5 helped ￿ ensure that patiellls had tl)e knowkdge needed to access COVID-19 treatment5 in a timely mallller. Page 3

[m￿lUF10DEF1CIENCy iJK Repoi-t of the Tiwstee$ (or Ihe year ended 31 Mai'rh 2024 RA151ng xwiiene5$ ofillullunodefldtllcy It5 Imp*¢t For th05¢ living ivith in]munod¢ficiency, learning abolit the experiences of others diagnosed ivith the conditioll can be a vahiabk means of supw>rt. We add¢d five patienl stories to our library of lii'¢d experie￿¢ stories. Tliese covered the experiences of liiryng with secolldory iillmuii(MleficiellCy. coinmon variable illunuiKMleficiency ICVIDI aud caring for children with activated P13K delta syndrome IAPDSI. We would like to thank all involved for sharing their stories, We were invofved in social media campaigns in 5UPPOrt of oiw mission and to highlight the experiences of ￿r commiu)ity. These included Rare Disease Day. World Primary Immunodeficiency WeeL Plasma Donation Week and World Antimicrobial Resistance Awareness Wttk. We increased oiir social niedia presence over ilie year. Oiir Facebook reach was 26.856. with 6.300 visiis lup 1120/0 compared with ?0?21?31. and we had If 4 new followers lup 60/tsl. We gained 39 new Insiagfam followers. and our reach increased by 1690/0 ￿ 798 on Th￿ plarfom). On x Ifom)erly Twiirerl. we had 25 rt￿Y foll￿ver$. Our advocacy work was our most popular conieni. fOll￿ved by paiieiii stories. These figures are above rhe average rate quoted for non-profii coti)municaiions of 25.2Vo (source 2024 Social Media Indusuy Beiichiiwk Report | Rival IQI. Suppoi'tth8 I'eseRirh Iiivolienienl In cllnlcnl ti'knls Ai ihe re41￿1 of clinical in)munolo8y research tewns. inunw)od¢fici¢n¢y UK wro1¢ Support lett¢rs for research proposab. ￿11 e-ncwsletters aiid social ii)edia channels proiiioted oppornu)iti¢5 for people io take PArt in reseRrch swdi¢5, u)¢liiding the COVID-19 f(Ku5ed clii)ical trial$ STRAVINSKY 8nd PROTECT-V. We piiblish¢d ii)formAlion on r￿are￿ outcomes in our monthly e-newldier$ ond on OUT web$ile. [minun￿efIC1¢llCy UK awarded a granl of £1.560 to 5UPPOrt research ill￿ the rympacl of a diagu05is of prin)ary or secoiidary iiwiiuiiodeficieiicy on psychological liealtli iii the United Kingdon).. The projeci leaders are Dr Mari Cainpbell, Coiisiiliaiit Clinical Psycliologisl at the Royal Free Lo￿10￿ NHS Foiuidation Tn15t and Dr Philip BrighL lmini￿oI08Y Consultant at Ihe North Bristol Hospital Trust. Involving patients froni seven inin)iu)ology cenlres, the Tesearch will foals oil the qiiality of life and iiiental liealth of people diagz105ed with imjnunodeficiency. It is t￿ped that the results of this 5ft￿Y will give an iniproved iiiiderst￿￿Jng of palieiit iieeds iii tIKse areas. wliich is iinportant for inforniing palient-centred care. policy development and decision making. Oui. adi'ocfvry woj'k to suppoi't tlke cominunltv As a basis for advocating for improvements in care for people affected by inllnunodeficiency. we collaborated with Takeda UK Lid and Inieraclioii Marketing & Public Relations Lid io design and conduct a volliniary onliiie siwvey. Our ain) was to beiier l￿derStsnd the current experiences of paiienis with priiiiary or secondary jiiiini￿odefIcLency. The sutvey consisied olmiiliiple choice and free rexi questions and was open beNeen Jiily and Septeniber 2023. The survey reslilis were collated by an independeni healthcare commi￿lCa¢1OnS consultancy. in accordance with UK da￿ protection laws. This tvork was fiilly fi￿ded by Takeda UK Ltsl. A filial report. wlth recommendaiions hr NHS leaders alld medical professional organtsaiions. w'ill be ￿lbliShed in auiumii ?024. Immuncdeficienry UK wotked with NHS Blood and TraL8plani INHSBTI io raise awareness ol the importaJKe of plasma donation in the UK. Plasma contains ani]b￿lIeS. which ate viial in the f￿h1 a8ains¢ infections and diseases. For 7.000 ￿>ple with priillary or secondary i[n￿1￿0deflCIency. immuuoglobiibn IIGI therapy derived from plasma doi)aiions is esseiiiial for their quality of lrfe a￿1 survival. With a cuneni ivorldwide shortage of plasn)a and ittcreasitig den)and (the li￿lIber of people reqiiiring IG tre8in)ent l)as ri8en by 3LVg worldwide in the pasi five years). there is an urgeul n¢cd ¢0 improv¢ th¢ UK'S s¢lf-suffici¢iicy in IG 511ppIy. Awareness of the sittiation was raised throilgh our social media channels. using people's stories about the differaice that having IG therdpy has n)8de to their quality of lif¢. We partnered with NHSBT to co-host a Plas11￿ Awaraiess Parlianientary Reception at the House of Con￿10n5. which brought ¢ogedier MPS. heal¢hcaTe professionals and our patient ambassadors to disc115S the critical iniFX>rtance of pla￿lla donation in the UK. The reception, Ivhich included presentation from o primary inunvn(Kleficiency patienL served as a platform to lalk aixmit the life-changing impact of IG therapy and to seek supp)rt for policies that iNould better SUPWrt the UK'S plasma collection programme. The event attracted SO MPS. We are extremely grateful to NHSB T and Munira Wilson MP, who spjllsored the evenl, foi the opportunity lo share the experience of those affected and the needs of our commuiuty. Page 4

[m￿lUF10DEF1CIENCy iJK Repoi-t of the Tiwstee$ (or Ihe year ended 31 Mai'rh 2024 Our CEO was itwited by NHSBT io give a talk atrrt)ut the im[￿N0￿Ce of IG thernpy for patienis with iittmunodeficien¢y, ai the oF¢ning of a new pla51na colle¢¢ion centre in Birniinyjiani. Immun￿1¢ficiencY UK collaix)rad with Genetic Alliance UK to sup]xirt a &icce5sful application by an affected fatnily to the Hunwi Fertilisation and Einbryology Authority to ￿¢¢ll$¢ pre-implantation get]etic testing for monogeuic disorders for the rare primary immuJKdeficiency called Scbimke immuno-osseous dysplasia. We subinitted a leiier to NICE. co-siwied by ihe Britisli Society for Inuiiiinok)gy Clinical Iinn)iinology Professional 1m1nun￿efj¢LencY UK Nettvork Sieering Groiip ICPINI. challenging NICE'S initial decision to exempt the dNg Leniolisib. as a treatmeni for ihe rare iii)munodeficiency APDS. from assessment ihrough their Highly Specialised Technology IHSTI route. Tlie HST progranune evaluates leclu)olo￿eS for very rare and. oftern very severe. diseases that iieed the specific coiisideraiions aiid flexibilities permilled by the prograinn?e. We were deligliied io leaxi) Iliai after conS￿etail011 of stakeliolder feedback NICE decided Ihai APDS n)ei all the criieria for HST appraisal. IMMI￿0defiCLencY UK will be advocating for access ￿ Leniolisib through submission of a consuliaiion response in ihe next rewprting period. Gene therapy i8 a potenual ciwe for people with cenain ty￿& of IMMI￿0der1cLencY biii. owing to gmall paiient niunbers. li is often noi con)mercialiy viable for coinpanies 10 invesi in and keep ilie ilierapies on The lik7￿Cl. We were Iherefore delighied io be inviied ro repttseni Ihe paiienr perspective ar ihe'UK Advanced Therapies Adowion Challenge, eveni at rhe Royal Sociery of Medicine in London, 10 discuss bariers and develop soliitions. ImMun￿eriC1e￿Y UK alw $ubmitied $i¥keholder responw io the following con$ultations.' NHS ¢onimissionui8 policy on Abara¢ept for autoinunune con)pli¢ations of prii)wy in)munodeficien¢y ¢au$ed by CTLA-4 or LRBA inulation$ Welsh Healih Specialised SeNices Cominittee's con5uliption on inununology %rvices Sipttilory pricing scheii)e consultalioii siipportiiig t]￿ prop)5al to remove Volimlary Scheme for Branded Medicineg Pricing and Access IVPASI costs froni plasn)a prodiictS. Tbe ronllnulng Impact of COiryD-19 Tlie effects of the COVID-19 panden)ic contiiiiied to liave an iiiipact oil oiir conuniu)ity. Oiir Ine21tal health survey shoived thal I￿10 of reSp￿IdelIts were still shielding, with a furthei 20910 having low confidei)ce in leavi1￿ their bonie and socialising. As part of the COVID-19 high-risk stakeholder coalition. Immunodeficiency UK took part ill mtttings with NHS England and the UK Healih Seciirity Ageiicy IUKHSAI concerning oi)going surved}￿ice of COVID-19 infection rales, emer8in8 varianis. access 10 COVID-19 n)edicines. a￿1 ￿CinatIon pro8rammes. and free laieral flow tesl$. As a stakeholder in this coalitioL we co-signed letiers and provided case $n￿leS for the following.. - A letttt to the UKHSA. raising collce￿ about the orgallisauon's deci8iOll to pause the Office for National Statssiics Coron¢ivinis Infeciion Si￿VeY. This sillvey provided iiilnerable people with the knowledge needed to niake infornied decisions re8ardiii8 the risk of coniraciing COVID-19 ihroiigh social n)ixin8. - A letter io the Secreiary of Stste for Health and Social Care conceming Ihe lack of liniely I￿ornIa110n for paiiellts on how to acce5S Post-ex￿>s￿re treatmcllts for COVID-19 via integrated care boards. followitlg the itan5fer of responsibiliry froill CMDUS. A Idler 10 the Priille Minisier concerning ilie coniiniied isolation facin8 iii)niunocthllpromised rople on the fourth anniv¢r5ary of th¢ UK COVID-19 lockdown and thc n¢cd for s￿¢dY accc5s lo protcclive tr¢atr)¢nl5. At the request of the Scottish GovenimenL Inullunodeficiency UK wbmiited a response to th¢ Scottish COVID.19 Inqu￿. Our respon5¢ helped the liiquiry le￿11 lo undeis¢and the uiipacls of the COVID-19 pandeniic on our organisation and the Inembers we represent. Page 5

INffiIUNODEFICIENCY UK Repoi-t ofthe Tiwstees for the year endtd 31 Mxi'¢h 2024 FINANCL4L REIIEW FIDAnelAI posltloll Our financial siaremenis for y¢ar ar¢ shown on pages 8 to 17. A summary of i]K fujancial results for the year ar¢ s¢1 out below. l'esouices Toial income for the year was £89,709, compared with £130.269 for the financial year 2022-23. We have noi received any income from legaeies this year. We offered a free ivill writing gervice rhis financial year ar￿ received two pledges. ResOlllft$ expellded This year The expenditure was £112,809 eompared with £116.426 for the finwwial year 2022.23. Resdves poM¢y Tokl re5etve5 of the charity as of 31$1 ma￿ h 2024 were £93,050 of wbicb £27,318 related to restricted fuiids leavitig £65.732 of unre5trieied fikl)ds. The tnjstees ton5ider thai it ts tM)d) pnident and appropriate as part of their risk managemeni policy ro niainiaii) a n)inimum level of eoniio8eney wirhiii free reserves 10 proV￿e 8 level of working ¢apiial thai proie¢is ihe conriniiily of oiir ¢ore work. io provide a level of fiinding for iinexpecied opwrninifi¢s and io prov￿¢ cover foT r￿kS 511ch as un(OTe5een expellditur¢ or unanticipat¢d 105s of income. Th¢ reserv¢5 poh¢y contiuucs to be that boldllw LI￿restricted frtt rescrves eqiial to a iiiiniiiitsni of 5.8 niollti)5 operalLII8 Costs Ipresently £12.(X)O rKr monthl. as an a¢eepiAble level 10 hold. This refleeis a bRI￿let betiveen being pnidei)i aiid Allowing the charity 10 direcl as niuch resource a5 possible inlo achieving its cliaritable aclivities.A$ of 31st March 20?4, free reserves tolalled £65.732 equatitl8 to S.4 month5 of operating cosls and is therefore in keepin8 With the reserves Folicy. Golni conre After niaking appr1)pr￿te eiiqiiiries, Ihe In￿lee5 hai'e a reas01)able expeclation Ihat the ChArity had ad¢qiia¢e re50urc¢g to continue in operational ¢xis¢¢nce for the foreseeable fuh]re. For this reason, tliey continue to adopt the going concern basis in prepaTiiig tlie finaiicial s¢ateiiKnts. Further delails regarding the adop¢i(Trn of the going conceni basis can be found in the Accounting Policiey. OUR A[￿ls FOR THE ￿EXT AR - To continue to raise awareness of primary and secondary Immu[￿der1e1CncY and provide 5UPW)rt services for those affecled. To contiiiue to give hardship gr￿lts lo affected ii)divithials iii i)eed. To contiiiue to ieview our iiiforniation ￿ld adil iiew infoniiation as needed. To launch a new website with improved accessibility al￿ dei'elop and increase our social media presence. To contiiiue to C￿lIp￿]gI1 al￿ adi'ocate on issues affecting our coinniunity. To Work iviih oiw conuiiuiiity to defiiie what needs lo be done lo Inake the case for funding. - To broaden incoine Stre￿￿5 to include fiinthaising from ITUSts and foundalions, iniproved promotion of regulai giving and ￿lI]dulg legacy-giving. To establish a iarger board of ￿Ste¢S ￿ facililak succession planning. STRIICTifRE, GOITRNANCE AND WAGEMENT Goi'ei'nkng dorminenl TtrLe charity is controlled by its governing d￿uMent, a deed of trust and conSti￿¢c3 an Iinincoipornted charity. REFERENCE APID ADLIIINISTIL4TlItE DETAILS Reglstei'ed CbNI'ltv nwnbei. 1193166 PrfllclpAI Addre$8 Nigliiiiigale Hoiise 46-48 Easi Sire Epsom Surrey KT17 IHQ Page 6

[m￿lUF10DEF1CIENCy iJK Repoi-t of the Tiwstee$ (or Ihe year ended 31 Mai'rh 2024 Trustees M$HABn￿¢ Dr M Buckiand Ms D H￿nn10nd Ms V D Brisse-uhlig Ms J E Shepard Ms T Moubazbaz Chair IndependeDt ExRtDiDei' Xeinadiii Nighiiiwale House 46-48 East Street Eps￿ll SuThey KT17 IHQ Approved by order of the board of trustees on..6th January 2025. and s￿ned on its behalf by: Dr M Bu¢kiand. Chair Page 7

llldependent ELgnthJei 5 Report to the Ti"ustee5 01 Inlmwiodetlrfienry UK IDdÈpeDdeDt ex4mlnei 5 1'epoi* to the ttmstees of I￿1￿￿￿￿denCleD(Y UK I report to the charity trustees on my exatninatioll of the accoiints of 1￿￿￿￿(X1¢flCjCllCy UK (th¢ Trn5tl for th¢ yrdr eoded 31 March 2024. Responslblllties bI5ts of report As the charity Inis¢e¢s of the Tnist yi)u are responsible for the preparatKin of ihe accounls in accordance with the Tequirements of tli¢ Charities Act 2011 I'the Act'l. I report in respect of my examination of the Trusl'5 accowit5 carried oul under Section 145 of the Act and in callying oul my exan?iiMlion I have folloived all applicable Directio1￿ giveii by the Cliarily Cominissioii under Seclioii 145l4llbl of the Acl. Independent ei￿n￿ne7"S Stalen￿￿1 I have coiiipleted my examinarion. I confirni that no material n)atters have come to my allenlion in connection with the exaiiiinaiion giving i)ie cause 10 ￿lieVe iliai ui aiiy niaierial respect.. accowiting records were not kepi in respeci of the Trnst as reqiiired by Seclion 130 of ihe Acl: or the accounts do noi accord willi those records: or the accounts do iwi comply iviih the appkncable reqiiiremenis coi1cern￿g the fomi and conieni of accoiinis set out in the Cfrcirities IAccow)L% and Reports) Re￿ILlI￿oi￿ 2008 oiher ilian 41lly reqiiiren)eni thai the accowiL% giv¢ tNe and fair view which is noi a mailer considered as part of ftn independeni exan)inaiion. I have no con¢em$ and have ¢om¢ a¢ross no oih¢r matters in ¢onn¢ttion with th¢ examination to wkn'¢h attention $I￿[￿d b¢ drawn iu tl)i$ rewm in order to enabl¢ a proper und¢r51andi118 of the ac¢ounis to be r¢a¢h¢d. Hazel Day Xeiiiadiii Nighiiiigale House 46-48 Easl Strttt Epsom Surrey KT17 IHQ Date.. .15th January 2025. Page 8

[m￿lUF10DEF1CIENCy iJK SIAt+ment of FknxllelAI A¢tlillles for the year ended 31 Mai'rh 2024 2024 Total fwid$ 2023 Toial Unre$tri¢ied fund Reslri¢ted (und$ Nole5 Ir4CONIE AND ENDOHNENTS FROM Donations and legacies 81.602 7,821 89.423 131.154 Other tiading activities tnvestment incon)e 30 256 256 115 Total 81.888 7.821 89,7(V) 131,269 EXPENDITURE ON SUPPORT 96,925 112,8( 116426 NET tNCOMEI{EXPENDITURE) Il5.0371 18.0631 123,1(K)I 14.843 RECONCILIATION OF FUNDS Total funds brought fonvard 80,769 35.381 116,lY) 101,307 TOTAL FUNDS CARRIED FORII'ARD 65.732 27.318 93,050 116,150 The notes form part of these fllwicial 51atenKnlS Page 9

IMUNODEFICIENCY UK B#lAnce Sbeet 3114lhrrh 2024 2024 Total 2023 Total Unresirieied fijnd P*9tri¢ted funds Not¢s CURRENT A&SETS Debtors C¥sh at bank 6,672 73,3rf 6,672 100,682 1.793 126.057 27.318 80.036 27.318 107,354 127.850 CREDITORS Amoun1$ falling due within one yeor 114,3041 114,3041 111.7(M)I NET CURREN[ ASSETS 65.732 27.318 93,050 116.150 TOTAL ASSETS LESS CURREf+lT LIABILITIES 65,732 27.318 93,050 116.150 NET ASSETS 65.732 27.318 93.050 116.150 FUNDS Unresiricred fi)nd$ Reslricred fijllds 65,732 27,318 80.769 35.381 TOTAL FiJf4DS 93.050 116.150 The financial sraiemeDrs were approved by Ihe Bojrd of TNsrees and authorised for i$su¢ on .6th January 2025..................... and wer¢ $i8ned on 119 beliAlf by.. M BuckÈand. Chair The note5 forni part of these fU￿￿ela1 statements Page 10

[m￿lUF10DEF1CIENCy iJK N•te$ to tlie FltsAllclAI Stxtements for the year ended 31 Mai'rh 2024 ACCOUNTING POLICIES BASIS OF PREPAIUNG THE FINANCLIL STATEhlENTS The financial staten)ent5 of ihe charity. wlu.ch 15 a public benefil entity l￿der FRS 102, have been prepared in accordance with the Charities SORP IFRS 1021 'Accounting and Repgrtillg by Charities.. Slat¢Jnent of Reconunended Practice applicable to Charities preparing their 8ccin]iits in accordauce with the Fillallciai Reporting Standard applicable in tlie UK and Republic of Ireland IFRS 1021 (effective l January 20191,, Financial Reporting Siandard 102 'The Fiiiancial Reponiiw stai￿ard applicable in the UK and Republic of Irelajid, and the Charities Act 2011. The financial statanents have been prepared under the historical cost convention. These financial statements contain in(oM￿tion in relalion to the Charity only. The presentational currency of these fjnancial siatemenis is GBP. The Clwity is a public benefit entity. The chariry has taken advantage of the following disclogure exempiion in prtparll￿ theye fllmllcial stsiemeni& as periniiied by FBS 102 'The Financial Reponing Slandard applicable in The UK and Republic of Ireland,: th¢ requiremenis of S¢cix)n 7 Sts*ment of Cash Flows. IC0￿ All iiicoi?ie 1$ tt¢ogiiis¢d in ihe Stsieineni of Financial A¢iiviiie$ on¢e the charity has eiitiilemeni io ¢he fimds, li is probable thai ihe in¢ome will be received and ihe atnounr can be measured reknobly. EXPENDITURE Liabilities are recowiis¢d as eX￿1}diti1r¢ Js 5¢)on as there 15 a legal or constructive obligation conuiiitti1￿ the ¢liarily lo that expei)dinire, il 18 probable that a transfer o( ecoiioiiiic baiefits ivill be required in 5¢111enient and the ￿lioU￿r of the obligalioii cali be n)easiired reliably. Expendiliire is accou111￿ for on an accnials basis al￿ has been classified iu]der headings that aggregate all cosl relaled kn the category. Where costs camiot be direcdy altributed to particular lieadings they liave beeli allocated to activities on a basis consistent widi ¢he use of resources. TLXATION The charity is exenwt from t&x on its charitable activities. Fuf4D ACCOUNTILYG Unrestricted funds can be used in accordance with the charitable objeclives al the discretion of the trustee5. Resiricied fiinds can only be used for pthicuLir resiricied piirposes ivithin ihe objects of the charity. Restriciions arise wheii specified by the donor or when funds are raised for particular resiricied purposes. Funher explanaiion of the nanwe and purpo$¢ of ef<h fvnd is included in rhe note9 10 the fu)anci•l staiements. PENSION COSTS AND OTHER POST-RETIREIIIENT BENEFITS The cliariry 0￿rateS a defined contribution pe115ion 5cbeiDe. Conlribiitions payable to the charitys pension schenie are charged io the Sthtemeni gf Fiiwicial Activitie5 in the peri(xl to which tliey retate. FINANCLIL INSTRUNIENTS Financial inst￿nIentS are ckssified and a¢count¢d for. ac¢oiding to the substanc¢ of the Contrac￿al Tangemenc as either fuwicial &ssets. fu￿nClaI liabiiitles or equity in51Tumellts- Trade and oiher debtors Trade and oiher debtors that are receivable within one year and do not constitute a f]nancing tran5aclion are recorded at the undiscouni¢d amount expected to be received. nel of any impairnient. Those that are receivable after more than one year or Consti￿te a fmancing transaction are recorded initially at fair value less transaction costs and subsequellity at amonised costs. net of in1pal￿ent Pagell continued...

[m￿lUF10DEF1CIENCy iJK Noles tty the FthAn¢lAI StAttnienls- ¢illllknued for the year ended 31 M￿-¢kn 2024 ACCOUNTING POLICIES- contlDued FINANCLIL INSTRu￿lENTs Cash and cash equivalents Cash and cash equivaleiits comprise cash ai bank and on hand. denwnd deposits with baJ)ks and other short-tem] highly IKiuid investinents with original ii]a¢urilies of tljree nionths or less and bank overdrafts. In the balance sheet. bank overdrafts are shown wiihiii borro￿.11]8$ 01 curreni liabilities. Trade and oiher creditors Trade and other crediiors are initially recognised at the transacnon price and are thereaftei staled al amortised cost using the effective interest method unless the effect of discounting would be imn]ateriaL in which case they are sialed ai cost. OTHER TRADING ACTIITfiES 2024 2023 Merch&ndise illcome 30 4ITSTMENT INCOME 2024 2023 Deposit accouni interest 256 TRUSTEES, REI4IUNEIL4TION AIW BEf4EFITS There ivere no ttiisitts, ren)unerauon or other benefits for the year ended 31 Marcb 2024 nor for the year ended 31 March 2023. TRUSTEES, EXPEr4sLs Expenses iotallin8 £55 12023 nil) were reimbursed io I w$t¢e12023 nil) durin8 rhe year in respect of travel ¢o$ts in¢urred. COMPARATIVES FOR THE STATEMENT OF FINAP4CLIL ACTTI'ITIES Uiireslricted fund Restri¢t¢d fut)d$ Toiol funds INCONIE AND ENDOl1Th￿ NTS FROM Donalion5 and legacie5 88,499 42,655 131.154 IDveslinenl income 115 115 TotAI 88,614 42,655 131,269 EXPENDITURE ON ChaA.Itable Attl￿tR*S SUPPORT 116.426 NET INCOMEI(EXPENDITURE) I4.￿1) 19.744 14.843 REcof4CILtATiof4 OF FUTr4DS Total fi￿￿5 br(wghi fotward 85.670 15,637 101,307 Page 12 continued...

[m￿lUF10DEF1CIENCy iJK Noles tty the FthAn¢lAI StAttnienls- ¢illllknued for the year ended 31 M￿-¢kn 2024 COLIIPARAIIVES FOR IHE STATEMENT OF FINANCLIL ACTII'ITIES- colltknued U1￿¢strIcted Re5uicled fwids T￿¥1 fithd$ TOTAL FUNDS CARRIED FORWARD 80.769 35.381 116,150 FUNDERS Below is a breakdown of fimding reco￿1]Sed in income in the fjnancial Peri￿J to 3 1st March 2024: 2024 2023 Phanning Technologies An]Del Medical LFB Biopharniaceuiicals Ociapham)a Bioiesl Solaris Health ll￿P1 E Shearsby CSL Behrin8 C SheEwsby R¢iushaw The Hospiial San￿daY Fund 10.000 5.000 5.000 4.750 3.600 2.000 1.679 1.000 8.626 950 500 11.5151 2.7 4.115 SW 7,8 42.155 In additioii to the above restricted funding, funds were received from CSL Behriiig of £35,0(K)12023 £35,0(X)I lo aid Iiniiiuzi￿er1cL¢licY UK lo iinprove knowledge and aivareness of prin)ary aiid 5ecoiidary iinn)wiodeficieiicy id SilPFQrt tlie provision of seTr'ices for palients. Fiinds were also Teceived fioni Takeda Ltd of £17.939 ¢0 lielp SUPPOrt i]￿ general nmning costs of rinini￿Qdcf1cLenCY UK. incli1dii￿ administratiNe support. cost of storage, Ifiln)enl. and deknvery of educaiional t)oklels ￿ld costs of providiiJg Buzzy, pain relief machines to familiey wlio require extra support foi dieir child wheii they Imve inunuiioglobuliii Iream)ent. Non-nioiietary siippon was also received: this has not been incliided in the accounts as donalions and expendinire as it is not kKJssible to consisienily value the conrribiiiion received. Dethiis of supprt are given beI￿V.. TAkedA - Collaborative project with Immiinodeficiency UK involving the developinent and roll-oui of a patient Irvey io explore tlie experience of individiials affected by printhry and seco1￿ary immi￿0derICiencJcs. The coniribution of Takeda was £36.000 io en)ploy a healthca￿lebarAty comniunicaiions agency. No direct payment was made ¢0 ]mmunodeficieJKy UK. IDvolvemeni in the 'Number 17, campfiign rai$illg awarenes$ of people livin8 with a rare disese and attendance 01 a Takeda filnded online workshop OD diversiry. equity. and inclusion. AmDel Medlcxl_ Thi5 project has completed ar￿ unspent fi￿d5 were returned to the fi￿der. Page 13 continued...

IMUNODEFICIENCY UK r4otes to the Flttanclxl StAtemtllts- contlnued foT the ye￿. euded 31 Marrh 2024 DEBTORS: ANIOUNTS FALLING DUE WITHIN ONE YLIR 2024 2023 Trade debtor5 Prepaymeiit5 alld accrued illcowe 617 1,176 6.672 6.672 1,793 CREDITORS: AMOtJNTS FALLING DUE IIryTHIN ONE YEAR 2024 2023 Tnde crediiors Taxauon and social secutity Other creditOTS 2.124 1.694 10.486 3,569 1,594 6,537 14,3fy1 11.7(K) MOITiIIENT IN FUNDS Net moveinellt in fulids Al 31.3.24 Al 1.4.23 Uniysti'kted thDd$ General fi￿d 80,769 115.0371 65.732 Re%lrtcled fuiidg BcK)Heis Website Digiial can)pai8ll alld reprilli of IPOPI trA)oklels Mei)ial healih webinars Patieni ei'enis and sup]x)rt 8raDts APDS aivareness project Travel costs Helplii)e cos The Hospital Sowrday fiuMI 4.497 1,229 16971 11.2291 3.800 424 16,648 2,692 6,￿0 174 3,717 363 787 16,648 2,692 16.0001 174 1,217 2,000 12.-$001 2.000 8.0631 TOTAL FUTr4DS 116.150 23.1001 93.050 Page 14 continued...

IMUNODEFICIENCY UK r4otes to the Flttanclxl StAtemtllts- contlnued foT the y￿. euded 31 Marrh 2024 IOITLIIENT IN FUTr4DS. contlnued Nei movemenr in fund$. in¢ludeil ill ihe above are as follows.. Incowing resources Moveweut ID fimds expeuded UthiYs11'kled fwids General fund 81,888 196.9251 115,0371 Restd¢l￿ tknids Book]e13 Psychology project Website Digital cat]Ipaign and reprint of IPOPI )oklels Moiiihly e-newsletler APDS awareness project Travel costs Helpline cosrs Tlie Hospital Sawrday fvnd 16971 16971 (1.5151 11.2291 (1.2291 3,704 2,700 13.3411 12.7001 16.0001 14371 13.0001 363 16,(K)01 432 soo 2,IX)O 12.SOOI 2.000 7.821 1 5.8841 8.0631 TOTAL FUNDS 89,709 1112.8091 123,1001 COJDPAlYlth'es foi. moi'enwnl In Net moveinent in fuiids Al 31.3.23 Al 1.4.22 Uniysli'kted fuDd$ General fund 85,670 14.9011 80.769 Restrfcted funds B(K)kieis Helpline Trainin8 Website Digiial can)pai8n &nd reprint of IPOPI ix)okleis Mental healrh webinars Patieni eN'enis and supp)rt grants APDS aiiareiiess projeci Travel ¢osl$ 3,424 415 3,332 1.073 3.302 12.1031 4.497 3,717 1,229 1,164 3,310 3,992 17401 13.338 11.3001 6.000 174 424 16,648 2,692 6,000 174 19.744 35.381 TOTAL FUNDS 101,307 14.843 116,150 Page 15 continued...

IMiINODEFICIENCY UK r4otes to the F￿#￿tI#l StAtements- contlnued for the ye￿. tnded 31 Mrcb 2024 IOITLIIENT IN FUTr4DS- ¢ODtlnued Comparative net mov¢m¢nt in fiityjg, ill¢hJded in the above are as loliows.. In¢omiti8 resourees Resources M0Ven￿lI expended in fijnds UDYesti.kted fwids General fund 88,614 193.5151 4,9011 Restdcted fwids B￿)kletS Psychology proj¢¢t Helplu Training Web5Lte Digiial can)pai8n reprini of IPOPI ixjokieis M¢ntal health webinar5 Monthly ¢-newsletter Palienl evenls and SUPFrt)rt grants APDS awaraies5 proje¢¢ Travel ¢os¢5 Helpline Costs 2,250 s,￿0 6,IK)O 11.1771 15.0001 12.6981 12.1031 1,073 3,302 (2,1031 1,252 13,626 3,600 11.99?) 12881 13.6001 11.3001 14.0001 12.$31 15001 17401 13,338 11,3001 6,0(K> 174 10,IM)O 427 500 42.655 22.9111 19,744 TOTAL FUTr4DS 131,269 1116.4261 14.843 The fijnds broiight foNard Kefle¢t ilk)se a¢cuinuknkd by th¢ Prin)ary Imniunod¢fKien¢y IPIDI UK s¢¢tion of Geiie People Iforjllerly Gendic Disordets UK) which were trrtnsferred into In)n)Iiiiodefi¢ienty UK when it beeame ils oivn entiry effective fron) 1st April 2021. Those fijods ivhich wer¢ r¢siri¢t¢d at that dale have b¢¢n transferred into their own restrieied fi￿d$ within these aceouni$. De$¢ilpdoll of fundi Booklets - Funding to cover the Cost of printitig copies of srrtifie infornution b￿)kIds. Psy¢holo8y proj¢¢t . Fuiiduig 511ppoh. A5 part of # iiiiilii-¢harity initiatiV¢. for A chni¢al p5y¢holo8y W)5itson ai Departinent of Iinmuiiology, Biriningham Heartlands Hospital. This project ha5 fiiii5hed and iinspenl funds ivere r¢tum¢d to the fwider. Helpline Training- Funding to 5UPPOrt the tiainillg of volunieer5 ￿ man ihe IMInun￿l¢rl¢1cllCY UK helpiine. Monthly e-n¢wsletter SUp￿rt for the publication of a monih]y e-new51etter for Immi1￿deliCIenCY UK meinbers coNerillg April 2023 - December 2023. Website - Funds for the development of a new websile for In?mwi(Kleficiency UK. Digital campaign and r¢print gf IPOPI materials - Reprint and dissemination of IPOPI educational materia15 and support for a digital inarketing cainpaign for World Pl Week. Metllal healih webinars- SupFKTrrt for improvillg the n?entsl hed￿h of the immunodeficiency commwiity. Palient events and sup￿Trrt grants- sup[￿ for patient events and patient support granls. Activdted P13K Deltrl Syndrome- Develcymait of patient Stories and APDS infOrn￿tion for the website. Travel- funds to cover travel costs to specific events and conferences. Page 16 continued...

INffiIUNODEFICIENCY UK Trlotes to the FfiDAD¢l#l Stattnients- contknued for the year endtd 31 M￿-th 2024 LIIOITMENT IN Fuf+lDS- eolltlnlled The Hospital SaTh￿day fimd - Provisioll of up to dale. medically reviewed educational b(x)klets for fa￿l[les affected by rare prllllary iDll]llJlle deficiencie$. io. EL¥qPLOYEE BENEFIT OBLIGATIOT4S The total aniounl recogttised as an expense in the year for payrt￿llts made io der￿ed contribuiion pension schemes was £4,365. RELATED PARTY DISCLOSURES Tbere were no related party trdnsaetions for the year ended 31 March 2024. Page 17

[m￿lUF10DEF1CIENCy iJK DttASled StAtemtnt of FlnAn¢SAI A¢tfvltle$ for the year ended 31 Mai'rh 2024 2024 2023 INCONfE AI¥D ENDOIINENTS Donatlolls and Ifyrle5 Donations 89.423 131.154 Other tJ'Ading arth.Itle5 Merchandise income IDveslment InCo￿t Deposit account inlere3t 256 115 TotAI Incon￿￿¥ i'esouiyes 89,709 131.269 EXPENDITURE CbArltAble Actiyltle Wages Social securiry Pensions Suiidries Marketing Evenis 58.823 2.225 4.118 4.358 16.845 20.847 2.349 4.365 4.775 21.739 8.491 1(4.072 107.216 Suppoi'e cost8 Goi'ei'DhDce c•its Al￿110rs, reilluneraiion Professional fee9 8,580 157 8.760 450 8,737 9.210 Total resources expended 112.809 116.426 Net (expeDdltuiYyIDcome 123.IlX)I 14.843 This page does not forni part of the sta￿tOry fmancial stalemeni$ Page 18