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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** - 07 **Chairman’s statement** 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 - 14 **Our website launch** 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. 3 ## 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:** - 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 – 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. 4 ## 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 5 ## 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). 6 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 7 ## 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. 8 ## 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. **----- Start of picture text -----**
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. 9 ## 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. ‘** 10 ## 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. 11 ## Supporting the immunodeficiency community Over the past year, we concentrated on five key areas: - Providing our community with reliable information through our website, printed booklets and e-newsletters - Offering practical and emotional support via our email and telephone services Raising awareness about immunodeficiency - Promoting better mental health - Advocating for individuals and families affected by immunodeficiency to enhance healthcare delivery and access to treatments ## **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** 12 ## 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 ## 24 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** **----- Start of picture text -----**
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. 13 ## 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 14 ## 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** 15 ## 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. 16 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** 17 ## 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.** 18 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 represented the patient perspective at the 'UK Advanced Therapies Adoption Challenge' event, discussing barriers and solutions for access to gene therapy medicines 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. 19 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. 20 ## **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. 21 ## 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 22 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 23 ## 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:** - Raise awareness of primary and secondary immunodeficiency and provide support services for those affected - Work with our community to define what needs to be done and to make the case for funding - Review our educational information and respond to community needs by developing new information where needed - Further develop our website and social media presence to ensure individuals with immunodeficiency have access to up-to-date and accurate information Give hardship grants to affected individuals in need - Offer mental health support to our members - Distribute Buzzy medical devices to children with immunodeficiency, to make needle insertion less painful and reduce stress on carers and parents - Campaign and advocate on issues affecting our community, including access to earlier diagnosis and specialised treatments - Secure more trusts and foundations funding to expand our staff resource and services www.immunodeficiencyuk.org hello@immunodeficiencyuk.org 0800 987 8986 www.immunodeficiencyuk.org 25 REGISTERED CHARITY NUNIBER: 1193166 IUNODEFICIENCY UK UDaiidlled FlnaDrknl SlateTheDl$ foi. the Yeai. Euded 31 M•iYb 2024 Xeinadio Nightli￿al¢ House 46-48 East Streel Epso Surrey KT17 IHQ [m￿lUF10DEF1CIENCy iJK coDIe￿t5 of tbe Fln*nrlRI Stateinents for the vehr eDded 31 Nlai'ch 11124 PAie Repojt of the TiThstee$ IndepeDdeni ExAmlDeJ"5 Repoi StAtemeDt ofFlnAnclAI Actliltles BAifince Sheet io r4oles to the FlnADs1ing 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$iw¢ the 115¢ of thir w¢bsite iising G(x)8le Analytics. During the reportin8 period. the websile attracted users froiii ¢)veT 130 c¢)untTies. in¢ludiiig the UK, USA, A115tralia and Caiiada. li received 36,618 pagevieivs, 10, I IJ lin￿[1¢ visitor5 ￿ld 2.(47 bo(Trkiels ii'ere d￿Vill0￿ded. The t&￿k1¢(S IIW5t frequently dowiiloaded were 'Keepiiig ivell and healthy iv1￿￿ yoii haN'e a PID,, 'Secoiidary iilln)iiiiodeficiencg, Priiiiary in)inui1￿Crl(lenCY the basic5', 'Subcutaneous infiisions of in)zniii)oglolxiliii a praclical ￿lIde for pa¢iei)Is' and '￿ilIbl9ts¢s and Immunodef￿iency'. DeVelop￿ent of Infoiiualloll leaflets and Trt. We add¢d five patienl stories to our library of lii'¢d experie￿¢ stories. Tliese covered the experiences of liiryng with secolldory iillmuii(MleficiellCy. coinmon variable illunuiKMleficiency ICVIDI aud caring for children with activated P13K delta syndrome IAPDSI. We would like to thank all involved for sharing their stories, We were invofved in social media campaigns in 5UPPOrt of oiw mission and to highlight the experiences of ￿r commiu)ity. These included Rare Disease Day. World Primary Immunodeficiency WeeL Plasma Donation Week and World Antimicrobial Resistance Awareness Wttk. We increased oiir social niedia presence over ilie year. Oiir Facebook reach was 26.856. with 6.300 visiis lup 1120/0 compared with ?0?21?31. and we had If 4 new followers lup 60/tsl. We gained 39 new Insiagfam followers. and our reach increased by 1690/0 ￿ 798 on Th￿ plarfom). On x Ifom)erly Twiirerl. we had 25 rt￿Y foll￿ver$. 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)ra*d 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 $n￿leS for the following.. - A letttt to the UKHSA. raising collce￿ about the orgallisauon's deci8iOll to pause the Office for National Statssiics Coron¢ivinis Infeciion Si￿VeY. This sillvey provided iiilnerable people with the knowledge needed to niake infornied decisions re8ardiii8 the risk of coniraciing COVID-19 ihroiigh social n)ixin8. - A letter io the Secreiary of Stste for Health and Social Care conceming Ihe lack of liniely I￿ornIa110n for paiiellts on how to acce5S Post-ex￿>s￿re treatmcllts for COVID-19 via integrated care boards. followitlg the itan5fer of responsibiliry froill CMDUS. A Idler 10 the Priille Minisier concerning ilie coniiniied isolation facin8 iii)niunocthllpromised r*ople on the fourth anniv¢r5ary of th¢ UK COVID-19 lockdown and thc n¢cd for s￿¢dY accc5s lo protcclive tr¢atr)¢nl5. At the request of the Scottish GovenimenL Inullunodeficiency UK wbmiited a response to th¢ Scottish COVID.19 Inqu￿. Our respon5¢ helped the liiquiry le￿11 lo undeis¢and the uiipacls of the COVID-19 pandeniic on our organisation and the Inembers we represent. Page 5 INffiIUNODEFICIENCY UK Repoi-t ofthe Tiwstees for the year endtd 31 Mxi'¢h 2024 FINANCL4L REIIEW FIDAnelAI posltloll Our financial siaremenis for y¢ar ar¢ shown on pages 8 to 17. A summary of i]K fujancial results for the year ar¢ s¢1 out below. l'esouices Toial income for the year was £89,709, compared with £130.269 for the financial year 2022-23. We have noi received any income from legaeies this year. We offered a free ivill writing gervice rhis financial year ar￿ received two pledges. ResOlllft$ 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$¢ of ef 174 10,IM)O 427 500 42.655 22.9111 19,744 TOTAL FUTr4DS 131,269 1116.4261 14.843 The fijnds broiight foNard Kefle¢t ilk)se a¢cuinuknkd by th¢ Prin)ary Imniunod¢fKien¢y IPIDI UK s¢¢tion of Geiie People Iforjllerly Gendic Disordets UK) which were trrtnsferred into In)n)Iiiiodefi¢ienty UK when it beeame ils oivn entiry effective fron) 1st April 2021. Those fijods ivhich wer¢ r¢siri¢t¢d at that dale have b¢¢n transferred into their own restrieied fi￿d$ 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