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 1st April 2022-<br> 31st March 2023<br>**----- End of picture text -----**<br>


Annual report & financial statements 

supporting individuals and families affected by immunodeficiency 


**scan me with your phone camera** 


www.immunodeficiencyuk.org 



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## **Contents** 

## **Why we are needed:** 

## **Currently in the UK** 

About Immunodeficiency UK 

Statement of Trustees’ 06 responsibilities 

07 Chair of Trustee statement 

08 

Our achievements at a glance 

10 

Living with immunodeficiency 

Supporting the immunodeficiency community 

Supporting the community through our helpline services 

Helping our members to have a safer time when seeing family and friends 

Providing hardship grants to people living with an immunodeficiency 

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Support activities for the immunodeficiency community 

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Our incredible fundraisers 

Financial accounts 


## 500,000+ 

people have an impaired immune system 


## 5,000+ 

people have a diagnosed primary immunodeficiency 


## 450+ 

different rare conditions are recognised as primary immunodeficiencies 


## 7,000+ 

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

Primary and secondary immunodeficiencies are underdiagnosed 

COVID-19 has made life extremely challenging for people who have an immunodeficiency 

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

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## About Immunodeficiency UK 

Immunodeficiency UK was registered as a 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). 

The charity officially launched on 1 April 2021 following the transfer of all assets belonging to PID UK to Immunodeficiency UK, through a Deed of Transfer agreement approved by Board resolution from Genetic Disorders UK’s trustees, taking effect at 23:59 on 31 March 2021. 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 400 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 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 have 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. 

## **COVID-19 has made life extremely challenging for people with PID and SID** 

Due to their underlying health conditions, some people with PID and SID cannot make an effective immune response against COVID-19.  They may have had seven or more COVID-19 vaccinations but, unlike most people, these may have given them little or no protection against infection. So, they can be at the highest risk of becoming seriously ill from COVID-19. 

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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, 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 (appointed 20-1-21) Hannah Bruce (appointed 20-1-21) Valerie Brisse-Uhlig (appointed 21-3-22) Tamara Moubazbaz (appointed 18-10-22) 

Lisa Gagliani MBE (retired 17-1-23) Diane Hammond (appointed 21-3-22) Jane Shepard (appointed 21-3-22) 

## Our staff 

Dr Susan Walsh - Chief Executive Officer (CEO) Fay Fagon - Digital Communications, Marketing and Fundraising Assistant 

## 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** (appointed August 2022) **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 7 times. 

## **Public benefit** 

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

## **Executive management** 

The executive organisation is led by the CEO, who reports to the Board of Trustees. The CEO publishes reports and performance indicators for each trustee meeting which are then used by trustees to judge progress against 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 £131,269. For our first year of operation from 20/1/21 to 31/3/22 income was £100,450. This year the expenditure was £116,426. For our first year of operation from 20/1/21 to 31/3/22 expenditure was £122,240. 

## **Reserves policy** 

The trustees consider that it is both prudent and appropriate as part of their risk management policy to maintain a minimum level of contingency within free reserves to provide against any unforeseen changes in income and/or expenditure. On the 31st March 2023 free unrestricted reserves totalled £81,296 equating to nearly seven months of operating costs and is therefore in keeping with the reserves policy of holding free reserves equal to a minimum of 6-8 months operating costs (presently £12K per month). 

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Trustees’ report 

**The trustees present their report for the period 1 April 2022 to 31 March 2023 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]).** 

I am delighted to contribute to the second annual report for Immunodeficiency UK. 

The presentation of the annual report is a fantastic opportunity to see what Immunodeficiency UK achieved in the past year. For us, 2022–23 was a busy and productive time. 

As the fear of the COVID-19 pandemic receded for many, individuals living with 

immunodeficiency – and their families supporting them – continued to cope with the fear of infection and its complications. We provided a lot of support for our members and lobbied decision-makers to ensure that appropriate care pathways were available. 

Supporting our membership was a main objective. This reporting period coincides with the cost-of-living crisis, and Immunodeficiency UK provided hardship grants to help patients and their families during this time. Distributed via clinical nurse specialists in immunology, the grants provided financial assistance to patients who otherwise would not have been able to afford to travel to a centre for ongoing care. 

I am delighted that we welcomed a new trustee to the board, which further strengthens the skill set that is available to support the charity. 

As our membership has continued to grow, so have the projects that we have supported: from consultations on new medicines in rare diseases, through support for new diagnostic initiatives (such as newborn screening for SCID) to developing and updating patient information and providing psychological support for patients and their families. 

Immunodeficiency UK is committed to ensuring that patients and their families remain the focus of healthcare services in all four home nations, but especially following the transition of healthcare provision to integrated care boards in England. 

## Dr Matthew Buckland 

Chair of Trustees 


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## Our achievements at a glance 


## 250+ 

people were supported through our phone and email helpline service. 

4150 

information booklets sent to immunology centres and individuals. 



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Summer Highlight<br>**----- End of picture text -----**<br>


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


We gave practical and emotional support through the COVID-19 pandemic. 


We raised awareness of immunodeficiency through campaigns and people stories. 

We helped fund a clinical psychology service for the immunology clinics at University Hospitals, Birmingham. 

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## Our achievements at a glance 

We advocated for the immunodeficiency community through responses to consultations and alliances with other charities to highlight the needs of people who are immunocompromised. 


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We provided advice and practical support for living with COVID-19. We sent out 400+ COVID-19 lateral flow tests. 


We awarded 13 hardship grants to help ease the burden of access to healthcare during the cost of living crisis. 

We reached 30,582 people through our Facebook page; gained new followers on Twitter bringing the total to 1,836; and continued to grow our Instagram account which now has 471 followers. 


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## Living with immunodeficiency 

## Jamie’s story about having APDS 

I am Jamie and I have the ultra-rare condition called activated phospoinositide 3-kinase delta syndrome (APDS). I was diagnosed when I was 2 years old. I am 17 now and a student with a part-time job. 

## **The challenges of living with APDS** 

My symptoms tend to affect my chest and bowels. I am prone to getting chest infections and, in the case of my bowels, and often one day in every week I will feel ill and have diarrhoea. Many of the challenges I have faced are mostly to do with trying to live a normal life – combining school, work and socialising with hospital visits, spending months at a time in hospital and being poked and prodded with needles. APDS has affected me a lot; it still does. Luckily people are very kind and will give me a pass if I miss a day owing to illness or if I have a hospital appointment. 

## **My condition can leave me exhausted, drained, both mentally and physically** 

Growing up with APDS made me feel alone and it felt like I couldn’t talk to anyone about it. Now I know there are other people affected, so that makes me feel less isolated. 

The condition saps my energy, both mentally and physically. I think it also has an impact on my diet because when I eat something with ‘bad’ calories, my bowel is immediately affected. It’s like my body is trying to get rid of the bad nutrients. APDS has kept me underweight for many years. 


My treatment is called immunoglobulin, which means I’m given antibodies every three weeks. But I have had many tests and treatments over the years – too many to count or name. When I was young, my mum used to bribe me by saying things like, ‘I will get you a hot chocolate if you’re a brave boy’, to help divert my attention away from the treatment towards the prize. It sounds stupid but it worked. 

My condition is a thing, I think, that ruins relationships because I feel like any partner would have to watch me suffer through pain and deal with a lot of stress. This means I try to avoid relationships as much as possible. My condition means I have to use the toilet a lot, so it would hold people up when leaving a restaurant or a cafe. 

## **Explaining APDS to other people** 

I explain my condition to other people as simply as I can. I tell them that I have no antibodies, so I am prone to getting a lot of infections. 

My wish is to reach out to people who have APDS; to build a community where people with the condition could talk and share tips about dealing with pain or the symptoms. 

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## Supporting the immunodeficiency community 

Over the last year, our work focussed on five key areas: 

- Supporting our community through authoritative information published on our website, in printer booklets and e-newsletters. Providing practical and emotional support through our email and telephone service. 

- Raising awareness of immunodeficiency. Supporting better mental health. 

- Campaigning and advocating on behalf of individuals and families affected by immunodeficiency to improve healthcare delivery and access to treatments. 

## **Our e-newsletters** 

Our monthly e-newsletters highlighted community news and our fundraisers, and featured health information, latest developments in treatment, research findings, and opportunities for clinical trial involvement. The average open rate was 53.9% (range 47.2% to 61.6%). These figures are above the average open rates quoted for nonprofit communications. 

53.9% open rate 28.8% click-through rate 


‘The information and help provided by Immunodeficiency UK is extremely professional and answers all your questions. I like to be told things in a straightforward way, and the information on their website has been invaluable in helping me and my family understand what I am living with and how my quality of life will improve in the future. It has also helped me to explain CVID to my friends, so that they understand the condition too. It’s difficult trying to summarise CVID in a short sentence or to describe it when it pops up in conversation.’ 


**From Mitch, who has common variable immunodeficiency (CVID).** 

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252 

## Supporting the community through our helpline services 

Number of new enquiries 

The demand for our online and telephone helpline services remained high. In this period, we received 252 new enquiries. Of these 75 (29%) were related to providing COVID-19 support. 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. 

**‘This is just so helpful thank you. I really appreciate your swift reply. It's good to know there is a point of contact.’  Jane, newly diagnosed with CVID.** 

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Number of recontact enquiries 

321 Emails sent 

## **Support offered** 

## **New enquiries** 


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120<br>100<br>80<br>60<br>40<br>20<br>0<br>Emotional Support DiagnosisTreatmentWork related BenefitsSignpostingAccess to healthcare AdvocacyPeer to peer support<br>**----- End of picture text -----**<br>



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Phone &<br>Email<br>Phone only<br>18 21<br>Professional<br>32<br>Enquiry<br>method<br>Enquirer<br>Email<br>213<br>**----- End of picture text -----**<br>



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Family member/patient<br>220<br>**----- End of picture text -----**<br>


**Advice on the Equality Act 2010 to Chris, affected by a secondary immunodeficiency and who was experiencing discrimination at work.** 

This has been very helpful information so I would like to say thank you for this. 


## COVID-19 related enquiries 


**COVID-19 Vaccine / Vaccine Response** 

**Access to COVID-19 treatments/PCR tests** 

**COVID-19 research studies and access to clinical trials** 

**0 10 20 30 40** 

**We also dealt with over 400 email requests for free COVID-19 LFTs.** 

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## Helping our members to have a safer time when seeing family and friends 

Thanks to a donation of COVID-19 testing kits (LFTs) from 2San, Immunodeficiency UK distributed over 400 boxes of LFTs to our members. This was at the time when LFTs were no longer available free to family members of the immunocompromised or the general public. 

This service demonstrated our unwavering commitment to the health and well-being of our community, ensuring easy access to essential resources during challenging times. The kits allowed people with immunodeficiency the chance to socialise by providing LFTs that they could give to friends and family so that they could test before meeting the immunocompromised. 

With this initiative, we empowered our members to take proactive steps in safeguarding their health. 

These tests provided a sense of security for those who are particularly vulnerable to the virus. With these testing kits, they could make informed decisions to protect themselves and their loved ones. 


**----- Start of picture text -----**<br>
        As someone who<br>            My granddaughter<br>doesn’t respond to<br>has plasma every 3<br>vaccines and relies on<br>weeks to treat her<br>LFTs for myself and my<br>immunodeficiency &<br>family, this will make<br>these tests will help us to<br>Christmas much easier.<br>feel safe at Easter when<br>     Many thanks<br>family are<br>this is appreciated - it<br>visiting.<br>seems COVID is not going<br>away & is a constant worry<br>for those with<br>compromised<br>immunity.<br>**----- End of picture text -----**<br>


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## Providing hardship grants to people living with an immunodeficiency 

Because of the increased pressure on families during the cost-of-living crisis, we wanted to do something to help families struggling with the extra costs that living with immunodeficiency can bring. So we launched a hardship grant scheme of £100 to help mitigate costs. These grants were available to people with a diagnosed immunodeficiency, with applications made by a recognised medical professional. 

The grant aimed to help with the extra costs that having an immunodeficiency can bring, such as help towards the cost of prescriptions, travel to hospital and access to care.  We awarded 13 hardship grants. 


It was a massive help to I'm a full-time carer and receive the grant as I was able live an hour away from the to put the money towards closest hospital that provides travelling for treatment. I lose a treatment for me, and I don't day's pay and have to pay to drive. Although I can claim travel 45 miles to my closest back some money for travel I clinic so it's taken the pressure can't always have the money off a little to have some help upfront to get to with the costs. the hospital. 

For four weeks whilst learning the infusion process, I travelled a nearly two hour round trip which with fuel prices was impacting on fuel use and one's finances. I now do treatments at home and have telephone appointments to avoid the journey. I appreciated the grant as a sole earner in the household, cost of living, elderly father at home it prevented getting into further debt. 

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## Supporting the immunodeficiency community 

## **Our website and information booklets** 

In collaboration with clinical experts at Great Ormond Street Hospital, we developed information on the rare primary immunodeficiency Complete DiGeorge Syndrome, and its treatment using thymus transplantation. Due to the increasing use of genomics technology within the NHS we updated our information on the use of genomics for research and diagnosis of primary immunodeficiency. We continued to update our information on COVID-19 vaccination programmes and access to lateral flow tests and COVID-19 treatments. 

Our work to develop a new website refreshing and improving content and accessibility continued. However, this project ran behind schedule due to the need to be reactive to emerging priorities within a small staff resource. The website remains a high priority and we are confident that this project will be delivered within the next period of reporting. 



## **Supporting the community through shared experience** 

For those living with immunodeficiency, learning about the experiences of others diagnosed with the same condition can be a valuable means of support. 

We would like to thank two parents who shared their experience of caring for a child with Complete DiGeorge syndrome and its treatment by thymus transplant, and two adults who shared their experience of living with activated PI3K delta syndrome (APDS). 




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Bethany Bryony and Oscar<br>**----- End of picture text -----**<br>


My wish is that all medical professionals know and understand what APDS is. The number of times I have had to explain the condition; it feels as though I am educating the medical sector. It becomes frustrating because, often, APDS is a contributory factor to my sickness at the time and impacts on my treatment plan. 

**Bethany, who has APDS** 

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## Raising awareness of immunodeficiency and its impact 

We collaborated with Orchard Therapeutics to assess the impact of Wiskott-Aldrich Syndrome (WAS) on those affected and caregivers. Following the data-collection process, our CEO presented the findings at the International Primary Immunodeficiencies Congress, in Portugal. The findings underlined the direct and indirect impact of WAS on families in terms of reduced quality of life due to the burden of symptoms and care, the psychological impact and the economic cost to those affected. The results highlighted the need for continued advancement in treatment options for WAS. 




An article on primary immunodeficiency, its diagnosis and treatment and challenges for the future was published in the Autumn 2022 edition of the RARE REVOLUTION magazine. 

During this period, Immunodeficiency UK had representation on NHS Scotland’s National Plasma Products Expert Advisory Group; the Prion Surveillance Study working group; the Scottish Parliament Cross-Party Group on Rare, Genetic and Undiagnosed Conditions and Public Health England’s Newborn Screening for SCID Pilot Oversight Group. 

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## Supporting the immunodeficiency community 

## **Our advocacy work** 

The COVID-19 pandemic continued to impact on our community. Evidence gained through our COVID-19 patient experience survey, carried out in August 2022, indicated that 28% of 448 respondents with primary or secondary immunodeficiency in our community were continuing to shield to protect themselves from getting COVID-19, with subsequent negative effects on quality of life and mental health. 

## **Responding to consultations** 

Access to anti-COVID-19 treatments, such as antivirals and monoclonal antibodies, following a positive COVID-19 test is a vital safety-net to people who are immunocompromised. Therefore, we submitted a consultation submission to the National Institute for Health and Care Excellence on the multiple technology appraisal for COVID-19 treatments: nirmatrelvir plus ritonavir (Paxlovid), sotrovimab (Xevudy), remdesivir (Veklury), molnupiravir (Lagevrio) and tixagevimab plus cilgavimab (Evusheld). 


As part of the COVID-19 high risk stakeholder group, Immunodeficiency UK took part in meetings with NHS England and the UK Health Security Agency (UKHSA) concerning the roll-out of the COVID-19 vaccination, changes in access to COVID-19 tests and COVID-19 medicines, and the ongoing surveillance of the COVID-19 pandemic. This provided an opportunity to share our community’s experience and seek shared solutions to the problems encountered. 

## **From Emma** 


‘I had my tonsils removed when I was 16, owing to the continuous infections I had throughout my childhood that wouldn’t shift with antibiotics. Then, I contracted pneumonia, which is rare at that age, but I was fortunate to be seen by an immunology specialist at the hospital. After a series of tests, I was diagnosed with common variable immune deficiency (CVID). My life had changed forever. 

I’m so grateful for the support of my family and friends, and to people in a similar situation who have shared their experiences on the Immunodeficiency UK website. Talk openly to your friends and family, and visit the Immunodeficiency UK website for advice and guidance – you’ll find a great online community there.’ 17 



## Supporting the immunodeficiency community 

## **Raising awareness of immunodeficiency** 

## **World Primary Immunodeficiency Week (WPIW) 2022** 

In the pursuit of raising awareness and fostering a sense of global community, Immunodeficiency UK took part in World Primary Immunodeficiency Week (WPIW) 2022. 

This annual event serves as a cornerstone for the international primary immunodeficiency community, bringing together organisations, healthcare professionals, and individuals affected by these conditions. 


Our social media platforms became vibrant hubs of information and support during WPIW 2022. Through impactful graphics, personal stories, and educational content, we reached a wider audience, sparking conversations and building a sense of community among those affected by immunodeficiencies. 

reach c7,900 people 

219 post clicks 

## **International Plasma Awareness Week 2022** 

Immunodeficiency UK raised awareness of the critical importance of plasma donations. Through patient stories and shared experiences, we underscored the life-saving potential of plasma-derived therapies. 

Participation in International Plasma Awareness Week provided Immunodeficiency UK with a platform to engage the public, encourage plasma donations, and emphasise the positive outcomes for individuals with immunodeficiency disorders. 


reach c3,000 people 

112 post clicks 

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## Supporting the immunodeficiency community 

We worked with NHS Blood and Transplant (NHSBT) in its campaign to encourage people in the UK to donate plasma. Plasma is essential to make life-saving immunoglobulin therapy which helps protect people with immunodeficiency from infection. We shared NHSBT’s publicity assets, and provided case studies to emphasise the importance of plasma-derived therapies for people with immunodeficiency. 






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## Supporting the immunodeficiency community 

## **Joining the #Forgotten500k campaign** 

Our COVID-19 patient experience survey highlighted the need for an alternative protection strategy as some people with immunodeficiency are unable to mount a full vaccination response due to having an impaired immune system. 

To raise awareness of the immunocompromised and the need for continued support for people at high risk of becoming seriously ill from COVID-19, we joined the #Forgotten500k campaign, alongside many other charities representing immunocompromised groups. 

As COVID-19 surveillance programmes were scaled back we urged the UKHSA, through jointly signed letters, to continue its monitoring programmes. These programmes are a valuable source of information to help people manage risk when living with the threat of COVID-19. 



## **Our aims for the next year** 

To continue to raise awareness of primary and secondary immunodeficiency and provide support services for those affected. 

To continue to give hardship grants to affected individuals in need. 

- To continue to review our information and add new information as needed. 

- To launch a new website with improved accessibility and develop and increase our social media presence. 

To continue to campaign and advocate on issues affecting our community. 

- To work with our community to define what needs to be done and to make the case for funding. 

To broaden income streams to include fundraising from trusts and foundations, improved promotion of regular giving and building legacy-giving. 

To establish a larger Board of trustees to facilitate succession planning. 

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## Our incredible fundraisers 

## **Gateshead Rugby Club Fundraiser** 


In October of 2021, Steve lost his kind and fun-loving son Jezz after having two stem cell transplants to treat his immunodeficiency. 

‘Jezz passed away last October and left a great hole in all our lives. In his 26 years he did a lot, not just achieving for himself but in the wonderful effect he had on other people’, says Steve. 

To celebrate Steve’s life and to help raise funds for Immunodeficiency UK the family along with Gateshead Rugby Club Beer Festival hosted a fundraiser. Jezz was a member of Gateshead Rugby Club and he was known as T Rex due to his running style. 

The event raised £3,350 bringing the total raised to over £4,600 for Immunodeficiency UK and we couldn’t be more grateful. This donation will go toward helping us to support more people living with primary or secondary immunodeficiencies nationwide. 

£4,600 was raised in memory of Jezz 

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## Our incredible fundraisers 

## **Sponsored 3-hour Zumbathon** 


Karen Henderson is an immunology clinical nurse specialist at Addenbrookes and a long-term supporter and often signposts patients to our services. 

**She says ‘I have over two decades experience within Immunology as a specialist nurse working with individuals and families with primary immunodeficiency and secondary antibody deficiency. I have signposted many patients to your excellent charity over the years and hope that our contribution helps with all the excellent support you provide.’** 

Karen organised a sponsored 3-hour Zumbathon alongside Katrina Hyland of fitness studio KFit in St Neots, Cambridgeshire. 

A great bunch of amazing and charitable people got involved (pictured above). The event raised over £900 for Immunodeficiency UK. 

£900 was raised 

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## Our incredible fundraisers 


## Diane’s Olympic Triathlon 

Immunodeficiency UK trustee Diane completed an Olympic triathlon on August 28th – this consisted of swimming 1.5km, cycling 40km and running 10km – to raise funds for our helpline. 

Both Diane and her daughter Rachel are affected by an immunodeficiency so this is a cause close to her heart. The pandemic has been a particularly difficult time for people who are especially vulnerable to COVID many of whom, like her daughter Rachel, don’t get a full protective response from the vaccines, with some people still shielding. 

Immunodeficiency UK has advocated for these patients, keeping them informed and supported in many ways, but especially through its helpline and Diane’s fundraising was to further support this work. Many find it to be a lifeline for advice, guidance and emotional support. 

Diane has raised over £1,500 for the helpline. 

## £39,359 

was raised through public donations 

**2** 23 



## Thank you 

Thank you to all our members, fundraisers, volunteers, staff, trustees, sponsors and members of our medical and patient representative panel for their continued support. We couldn’t do what we do without you. 


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


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

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REGI￿ERED CHARITY NUMBER: 1193166
IMMUNODEFICIENCY UK
UllAMdi¢ed FinAn¢knl Statements for the Year E￿ded 31 M*reh 2023
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Surrey
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IMMUNODEFICIENCY VK
Report of fbe Trusieu
for the yur ended 31 March 2023
REFERENCE AND ADMINISTBATIVE DETAIIS
Regi5teTed Charlty number
1193166
Prineipal #ddress
PO Box 12635
Colchester
Essex
C07 SAN
Trnsteej
Ms H A Bru¢¢
DT M Bu¢kland Chair of TNstees
Mrs L E Gagliani MBE {resi8ned 17.1.23)
Ms D Hammond
Ms V BrissewUhli8
Ms J E Shep8rd
Ms T Moub4zb4 {appoini¢d 18.10.221
Imdepelldetht Ex*mlther
Tudor John Limited
Nightingale House
4￿8 Easi Strttt
Epsom
Siirr¢y
KT17 IHQ
Approved by order of the l*)#Td of ¢ru5te¢s on ..24 Janyary 2024........................................... and 3tgned on its behalf by:
Dr M Buckland- Chair ofThuttts
Page 5

Ind¢p¢ndeDt Examiner's Report tts the Tntst¢es of
Immunod¢fi<i¢nry UK
Indtptttdt￿t ¢ximiD¢r's r¢port tg the lrnsltts of lffimumodefKl¢D¢y U
I report to the Charity trU￿e¢S on my examination of the accounts of Immunodeficiency UK (the Charity) for th¢ y¢ar
ended 31 March 2023.
Responslbllltles #nd bA$iS of report
A5 the Chwity trustees of the Trust you art responsible for th¢ prepnI￿n of the accounts in ac¢ordanc¢ wilh th¢
requirements of the Charities Aet 2011 (Ihe Aci).
I report in r¢spe¢t of my examin￿10￿ of the Charity's accounts ¢￿I¢d out under Section 145 of the Act and in carryin
oiii my exominalion I hve hllowed all 4Jplic#ble Dirt¢iions liven by the Clwity C¢mmiMion uilder Stetion
145(5Kb} of ihe Ath.
Ind¢p¢ftd¢Dt txArnintr's Jlitemtnt
I have ¢omplded my examination. I confum th•t no matters h￿t c(rfn¢ to My attention in connection with the
examination 8IVln8 me cause ty beli¢v¢ that in any material respeei:
accounun8 re¢ords wert not kept iti rtsptci of the Charity &8 required by Stttion 130 of the Ac4 or
the a¢¢ounts do not accord with those records. or
the llL£OUnts th) noi comply wilh the applicable r¢quir¢m¢nts eoncernitig the form and ￿ntent of •¢¢ounts $
out ITh the Chariiits (Accounts at)d Reports) Regulation5 2008 other than any requiremeni that the a¢￿Unts 8ive
8 true and fwr vi¢w which is not a matter considered as of an independ¢nt examinatioo.
I hav¢ ￿ concerns and h￿e come a¢￿5$ no oiher maiiets in connection WlTh thc c¥amination ￿ which Attention should
be drawn In this report in order to enable a kyoper undeTMandin8 of the J¢counts ￿ be reached.
H￿¢1 Day
Tudor John Limited
Nightin¥ule House
46-48 East Street
Epsom
Surrey
KT17 IHQ
Date.. ..4.44K ..&A4
Page 6

IMMUNODEFICIENCY UK
St#tement of Fin*neial Attivltles
ror the year thded 31 Marth 2023
Period
20.1.21
Year Ended
31.3.22
Totsl
funds
Unrestricted
Restricted
fund5
Total
funds
INCOME AND ENDoWME￿fS FROM
Do*ations and legacies
88.499
42.655
131.154
100,450
Ihvestmeni irteom¢
115
Total
88.614
EXPENDITURE ON
Chiritgbl¢ aciivltie$
SUPPORT
116426
NET INCOMEI(EXPENDITVRE)
<4.901)
19.744
14.843
(21,789)
RECONCILIATION OF FUNDS
Total funds brought forward
85.670
15,637
101.307
123.096
TOTAL FUNDS CARRIED FORIVARD
35
116 150
101307
The note5 fonn part of these rw¢a￿la1 st*¢m¢nts
Page ?

IMMUi%ODEFICIENCY UK
B*hnce Sheet
31 MArcb 2023
2023
Totsl
funds
2022
Total
funds
fi￿d
funds
Notes
CURRENT ASSETS
ikbiors
Ct%h at bank
1.793
126 057
i.962
119.041
90.676
35.381
92,469
iS,381
127.850
CREDITORS
Amounts falling du¢ within one year
{11.7￿>
{11.700)
(21.6961
NET CURRENT ASSETS
80.769
116 150
101307
TOTAL ASSM LESS CURRENT
LIABILITIES
80.769
35.381
116.150
101,307
NET ASSETS
116 150
101307
FUNDS
Unresiricied funds
Restricted funds
80.769
85,670
15.637
TOTAL FUNDS
116 150
101307
The financial Ststhents were approved by the Bo•rd of Trustees and authori1￿ for issu¢ on
..24 janu￿ 2024.........................
.. wue si8ned ￿ 115 behalf by:
M Bu¢klthd- Ch•irof Tnjsttts
The notes fonb ￿ of these fuwicial 5tatemcnts
Page 8

REGISTERED CHARITY NUMBER: 1193166
IMMUNODEFICIENCY UK
Ullaudited Financial Statements for the Year Ended 31 Mgrch 2023
Tudor John Limii¢d
Nightingale House
4648 East Street
Ep50m
Surrey
KT17 IHQ

IMMUNODEFICIENCY UK
Contents ofthe Financial Stattments
for the yoar ended 31 March 2023
Page
Report of the Trustees
Independ¢DÉ ExarDiner's Report
Statement of FiDancial Aetiviti
B&lanee Sbeet
r4otes to the Fillanci41 Statements
9 to 15
Detailed Statement ofFinancial Activities
16

IMMUP40DEFICIENCY UK
Report of the Trustee5
for the year ended 31 M4Tch 2023
The trustees presertt their rq)ort with the flnaneial statements of the Charity for the year ended 31 Marrh 2023. The
trustees have adopted the provision5 of A¢coun¢ing and Reporting by CharitL¢5'. Statetnent of Recommended Practice
applicable to charities preparing their accounts in accordance with thc Financial Reporting Standard applicable in the
UK 8nd Republic of IrelaDd IFRS 102) (eff¢Gtive l January 2019).
OBJECTIVES AND AcfiviTILS
Objectives and aims
We work on behalf of people affccted by primary and secondary immunodeficiency irt the UK and their families. Our
mission 15 to work with patients, health¢are professionals and rElevant or8ani5ations to ensure that those affected by
primary or sewndary immunodefi¢ien¢y have the knowledge needed to manage their condition effe¢tively. We aim lo
ensure that potients, health need5 are understood and addressed by those involved in heAlth¢are poli¢y and delivery.
We are dedicated to helping people affected by iminunodeficiency through our infomiation, p¢¢r support and advocacy
activities. and to supporting and empowering people to understand and manage their condition. We make it easy for oi
members to participate in re5carch trials to fvrtiier the search for treatsnents and a cure.
Our objectives. as set oui in our Memorandum and Articles. 8re'.
The advan¢em¢nt of health and the relief of people affected by pritnary and s￿ondary immunodeficiency and their
families and people responsible for their welfare, includin8.'
o by providing assistance. advEce or guidance in relation to rnan28ing th¢ir ￿nditIOn atxd improving the diagtMTr5iS of
these conditions, their treatn)ent and the quality of life of those affe¢ted
o by promoting awareness and understsnding of primary and sccondary immunodeficiency within the general publi¢
and medical profession in orderio better understand these conditions and their impact
o by providing a l)elpline 5eryiGe, events and pra¢tical help and advice.
To encourdge and support resear¢li into the Gaus¢s, treatments. prevention and cures for primary and secondary
immunod¢fi¢ien¢y, and tts publish the useful results of that research.
Public benefit
In s¢tting obje¢tives and plAnning activities, the tNstees have given due eon5ideration to g¢neTai guidan¢e published by
the Charity Commission relating to public benefiL including the guidan¢¢ Public benefit.. running a Charity (PB2).
Representation
To help Immunodefi¢ien¢y UK in lis work, we are a meinber of several umbrella groups, including Geneti¢ Alliance
UK, the Specialised Healtlicare Alliatt¢4 Benefits and Work and the National CouD¢il for Voluntary OTganisation5.
ImmunodefJ¢iency UK i5 the UK national member of the JDtemational Patlent Organisation for Primary
ImmunodeficÉeTrcies {IPOPI).
The chief executtve offi¢¢r {CEOI of Immunodeficiency UK i5 the patient representative on NHS England's newborn
screening oversight ¢Otnmittee for Severe combined immunodeflciency (SCID). She ts also the patient rrpre5entatsv¢ on
the Haplo+4kids clinical trial to improve haploidentical donor stem cell transplant outcom¢5 for children 2nd
#dolescents with immunodefieiency. Memb¢rs of our patient representative panel have held patient and public
involvement posit1005 on the COVID-19 va¢cination in autoi]nmune diseases (COVAD) study and the prion
surveillonce study working group.
Page I

IMIMUNODEFICIENCY UK
Report of the Trustees
for the year ended 31 M*reh 21123
ACHIEVEMENT AND PERFORMANCE
Our helpliRe service and other support *¢tii'ities
Through our helpline, we responded to 252 new enquiries and 63 enquirie5 from existing conta¢ts. To those people who
reached out. we provided reassurdD¢e. advised on diattdLOSiS and a¢¢ess to treatments. helped with ben¢fJts advice and
work-related issues. ￿ld signposted to other services or charitie5. Twerbty-nine pcr cent of cnquiTies were Telated to
COVID-19 support.
As part of our COVID-19 support, we distributed over 400 boxes of COVID-l9 lateral flow tests (LFTS) to our
members. The intention was to enCoUr￿￿e friends and family to take a test ahead of meeting up with a person affected
by an immunodeficiency. A negative LFT gave a degree of reassurance that any socialising among them could be safe.
These testing kits wei¢ distribut¢d when LFTS were no longer available free of cha￿e to farnily members of the
immwiocompromised or the public. We are grdteful to the company 2San for donatlll8 the LFTS to ImmunodefiGien¢y
In response to the costryof-living crisi5 Ihat has Put pressiire on many hoiiseholds. fI[￿nCial 5ltuation. we laun¢hed a
hardship grant scheine. Gra￿t$ of £100 are given to help indiviLlua15 and families wlio iiiiilit otherwise struggle with
travel Costs to a¢c¢5s healthcare. Wt awarded 13 su¢h grants diiring thÉs reporting period.
Being dia8tM)sed and living with a lifelong chronic condition takes both a physical and mental toll. As part of a
mulii-charity fiinding initiative that recognises the need for tailored p5ychologi¢al support for people affected by
imtnunodeficiency, we gave £5.000 to supptsrt the employment of a clinical psytholtsgist for Immunolo￿ patients
across Heartlands Hospitsl and Queen Elizabeth Hospital Birniingham. The focu5 of therapeutic work to date has been
varied, includints adjusth)ent to diar*n05is.' low mood and anxiety about health. the future and mortality. emotiondl
difficiilti¢s related to the impact of healih on roles and re5ponsibiliti¢s- and fatigue.
Informailon development and di55emination
In collaboTatÈon ivith Great Omiond Street Hospital. we developed infonnation on the rare priTnary immuncdefi¢i¢ncy
Complete DiGeorgc s}'ndrome and its treatmenr usin<y ihymLlS tFan5plalltation. We produced two new leafiets. The fiTSt.
Working with your GP, proEnote5 a positive dixtor-patient relationship. The s¢cond, 'AB¢ing and the immune system,.
explains how ageing affect5 the working of the Imniune system for people affected by iminunodeficaency. Recognisin
th¢ incr¢asin¥ use of genomics technology Within th¢ NHS, we urmlated our infonnation on the use of genomics for
researching and diagnosing primary immunodeficiency.
We produced monthly e-n¢wslerteTS, sharing Community news, research findings, latest developments in treatm¢nL
opportuniti¢s for clinical trial involvement and our fundraising actlVLties. The average open rate wa5 53.9030 {range
47.2/0 to 61.60/fj). These figures are above the 3v¢rage open rate quoted for non-PTofit ¢ommuni¢ation5 of 25.20
{sourc¢ Mail¢himp.' Email marketing 5tatLStlf5 & ben¢hmorks).
We distributed 105 of our b(y)klet$ directly to neThly diaun05ed poti¢nts or those t￿vigating their treatment p#thw&y.
Throuoh our oll-demalld order servi¢e, we prov2ded over 4.000 booklets to support patients at immunology centr¢5.
We increased our social media presence over the year. Our Facebook reach was 30.582, with 4,5)9 visits lup I loy.
compared with 2021122), and w¢ had 72 new 'likes' (up 38U/o). We gained 17 ntw Instagrain follow¢rs and our reach
increased by 8i /• to 604. On X Ifonnerly Twitter}. ￿.¢ had 181 new follower5. with 27,688 impressions. Patient 5torie5
were our most popular posts, followed by ncivs of our COV1￿] 9 advocacy work.
We continued our work to develop a nei¥ website with iTnproved ac¢e%sibility featlircs refreshing and improvin(p the
¢OE)tent of our existing website. Our progress in this area fell behind schedule, diie to oiir small staff resource needing to
react to other emeruing priorities. The update of our website remains an imponant priority and we are confident that the
launch date will be i¥ithiii the next reporting period.
Rai5iDg %wareThess of immuoodefi¢ieno it5 Lmpact
For t1105e liviiig with immunodeficiency, learning about ihe experiences of others diagnosed with the same condiiion
can be a valuable means of support. Ille would like to thank n¥0 parents sliared Iheir experienLC of rarinfJ for a
child with Complete DiGeorge syndrome and its treatment by ihymus ¢ransplant. and h4,0 adLtlts who shared their
experien¢¢ of livino ivith activated Plik del¢a syndrome {APDS).

IMMUNODEFICIENCY UK
Report of the Tru$t¢es
for the y￿￿ ended 31 March 2023
We collaborated with Oi¢hard Th¢rap¢uti¢s to assess the impact of Wiskott-Aldri¢h Syndrome (WAS) on affected
patients and theit ¢ar¢sivers. Followitlg th¢ dala-collection proce55. our CEO presented the finding5 at the International
Primary Immunodeficiencies Congre55. in Portugal. The findings underlined the direct and indircet impact of WAS on
families in ternis of reduc¢d qiiality of life diie to th¢ burden of symptoms and ¢are, the psy¢holOgic￿ impact and the
economic Cost to those affected due io lost eamings. The results highlighted The need for continued advancement in
treatment options forWAS.
We were involved in many Campaigns to support our mission. For World Primary Immunodeficiency Week 2022. we
rdll a social tn¢dia catnpaigti. with information and posters describing the signs atkd symptoms of immunodefici¢n¢y
and the different approache5 to treatment. We signposted to our library of over 30 patient experience stories, to
highlight the impact and ¢hallenges faced by those affected.
Wt worked with NHS Blood and Trdnsplant in its campaign to encourage people to donate p12sma. The case studies we
provid¢d emphasised th¢ importance of plasma-derived ih¢rapi¢s for people with immunodeficiency. The overall aim is
for the UK to become more self-suffi¢ient with Tegards to iMmu￿0g10bU1ln, whi¢h is made from plasma. More than
7.000 people with primary and secondary alltibody deficiency rely on itDmuThoglobuliii therapy to help protect them
against infection. We plan to continue with our collaix)r2tive working to encourage more dohors to come forward a]
becom¢ plasma donors.
Supporting re$￿T¢￿
Imniunodefi¢i¢ll¢y UK wrote support letters for thre¢ research proposals. Our e-newsletteTS promoted opportunities for
people to take part iTh research studies. We published inforniation on research outcomes in our nionthly e-newsletters
nd on ollr website.
We Collaborated with researchers from Leeds Beckett University to help develop a patient-reported outcome measur¢
IPROM) specificall). for people affected by primary and Secondary antibody deficiency. With a va]idated PROM, we
have the potential lo narrow the gap between the vi¢ws of medi¢ai professionals and patients ¢on¢¢rning tr¢atment and
¢are. We can a150 h¢lp h¢aithcar¢ services to provide more appropriate and pati¢nt-cri]tr¢d rare.
Our ￿dvOCA<Y Tryork to support the £ommunity
Th¢ COVID-19 pandemic ¢ontinued to impa¢t our community. Evidence gained through our COVED-19 paiient
experience survey. carried out in August 2022. iDdicated that 28Q/o of 448 respondent5 Wlth ptitnary or 5ecolldary
itnfftunodeficiency in our community were continuing to shield to protect themselves frojn getting COVID-19, with
sub5quent rJe8ative effects on quality of life and n)ental liealth. Using COVID-19 Su￿eY r￿ding$, we submitted a
response to the All-Party Parliamentary Group on Vulnerable Groups to Pandemics, report for tlie COVID-19 inquiry. It
highlighted the experien¢es of our community during the partdemic and the ongoin• chall¢nges they fact. The
exptriences of two of our ￿e￿bErS were leatured in the Daily Mail and Daily Mirror newspapers.
We continued to keep the COM￿u￿lIY in ail four hom¢ naiions updat¢d on news relating to COV]D-19. Our w¢bsit¢ and
newsletters carried infomalion on topics such as the 5prii)g and autumn vaccinatiotl pro(prammes, atse55 to free
LFTS. cov1￿19 medicines and antii¥)dy testing.
As part of the COVtD-19 higli risk Stakeholder group. Immunodeficiency UK took part in meetings with NHS England
and the UK Health Security Agen¢y {UKHSAI ¢on¢erning th¢ roll-out of di¢ COVID-19 va¢¢ination. a¢¢¢ss to
COVID-19 tests and COVID-19 medi¢in¢s, and tlie ongoing surveillanc¢ of ihe COVID-19 pandeniic. Tiiis provided an
opporturtity to share our community's txperienre and 5¢ek shared solutions to the problems encountered.
Acce5S to antL-COVID-19 treatments, such as antivirals and tnonoclonal alltibodie5, following a positive cov1￿19
test is a vital safety-net to pcople who arc immunocompromised. Therefore, we submitted a consultation sllbmission to
NICE on the multiplc technoloJo appraisal for the folloivino COVED-l9 treatments for preventinn COVID-19 in adults:
nirniatrelvir plus ritonavir {P￿￿0Vid), sotrovimab (Xevudy), remdesivir {V¢klury), molnupiravir {Lag¢vrio) and
tixag¢vimab pliL% ¢ilgavimab (Evusheld).
Page 3

IMMUNODEFICIENCY UK
Report of the Trustees
for the year ended 31 March 2023
Oiir COVID-l9 patient experience SUEvey highlighted the need for an alternative protection strategy among the
Communiry, as some people with immunodefIci¢ncy are unable to mount a full va¢¢ination response dut to their faulty
immune system. In additlOD, research recentl}. publighed in the Lancet Rheumaiology, ha5 highlighied that..
"Approximately one in five people M'ho are immuJK)compromised have no serological re5POnS¢ to COVID-19 I'accines
despite receiving three or tnor¢ vaccin¢ doses."
To raise awarcncss of the immunocompromised and the need for continued support for people at high risk of becoming
seriously ill from COVtD-19, we joined the #Forgotten500k campaign. alonJide the charitie5 Blood Cancer UK,
Lupus UK Leukaemia UK Leukaemia Care, Kidney Car¢ itK, Kidn¢y Research UK Anthony Nolan. Myaware,
Adion for Pulmonary Fibrosis, MS Society and Crohn'5 & Colit15 UK. As COVED-19 surveillan¢¢ programmes were
scaled back we urged ihe UKHSA, Ihrough joinily signed lett¢rs. to continut its tnonitOTIrtg prtsgrammes. Thes¢
programmes are a valuable Source of inforniatiott for people to manage risk when livijig with the thrcat of COVtD-19.
FINANCIAL REVIEW
Financi21 p051tion
Our fInancial Statements for the year are shown on pages 7 to 15. A summary of the flnaneial results for the year are set
oui b¢low.
Incornin￿ resource$
Total income for the year £lJ1.269. For tsur flrst year of opet3tion from 2011121 to 3llJ122 income w&8 £100,450.
We have not received any inconie from legacies this year. We will be offering a fr¢e will writing service in the next
financial year.
Resources expended
This year the expenditure was £116,426. For oiir first year of operation from 2011121 to 3113122 expendittire was
£122 ?40.
Reserve5 PDIicy
G¢neral reserves of the Charity at )Ist March 2023 weTe £81,296. The trustees consider that it j5 both prudetit and
appropriate as part of dieir risk maEJagement policy to mainlain a minitniim level of tontingency witliin free re5erve5 to
provide against any unfoieseen chan(pe5 Ln inCOTne andlor expenditure. The reseryes policy continues to be that of
holdintr iinresiricted free reserves equal to a minimum of 6-8 months operat1Ti￿ C051S IpTesenily £l?K p¢r month). as an
acceptable level to hold. This retle¢ts a balance between being prudent and allowing the Charity io dir¢ct as much
resource &8 possible into &chieving its chari¢able a¢riviiie5. 'Fr¢¢ reserves. of the Charity are calciilated ds total funds
1£116,0151 less designated re51ricted inGom¢ (£i4,7191. As at Jlst March 2023, free reserves totalled £81 ?96 equating
lo nearly seven months af opeTating costs and 15 Ilierefore in keeping with ihe res¢rves poli¢y.
CToints efineern
After makiTr(T appropriate enquiries, the irust¢es have a reasonable expectation that the Charity had adequate ¥esour¢¢s
io continue in operational ¢xi5t¢n¢¢ for the foreseeable fiiture. For this reason. thev continue to adopt the going roncern
basis ill preparin
the financial 5tat¢Fn¢nts. Further detail$ regarding the adoption of the going concern basis can be
found iii the Accounting Policies.
OUR AIMS FOR THE TriEXT YEAR
To continue io raise awar¢De55 of prllnary and 5e¢ondary imtnunodeficiency and provid¢ suppon s¢tvices for those
affected.
To continue to give hardsl)ip granis to 2ffected individuals in need.
To continue to review our information and add new infonnation as needed.
To laun¢h a new website with improved accessibility and develop and increase oiir so¢ial media presence.
To continue to campaiDn and advocate on issu¢s aff¢¢iing our ¢oinmuniry.
To work ivith our eotnmunity io define what needs to be done and to make the case for Fundijig.
To bToaden income streams to include fiindrai5ing frorn trusts aiid foundations, iinproved Promotion of regular 8iving
and biiilding legacy-giving.
To establish a laruer board of irustees io facilitate Sliccession planning.
STRLTCTURE. GOVERNANCE AND fvIANAGEMENT
Governing document
The Charity is Controlled by its governing document. a d¢Ed of trust And Constitutes an unincorporated Charity.
Page 4

IMMUNODEFICIENCY UK
Report of tbe Trustees
for the year ended 31 March 2023
REFERENCE AND ADWINISTIIATtVE DETAILS
Registered Charity number
119i166
Prin¢ipg1 gddr¢sS
PO Box 12635
Colche5ter
Essex
C07 SAN
Trustees
Ms H A Bru¢e
DT M Burkland Chair ofTwstee5
Mrs L E Gagliani MBE (resigned 17.1.23)
Ms D Hammond
Ms V Brisse4Uhlig
M5 J E Shepard
M5 T Moubazbaz {appointed 18.10.22)
IndepeDdeDt ExAminer
Tudor John Limited
Nightingale House
46-48 Easi Street
Epsom
SuJr¢y
KT17 IHQ
Approved by order of the board of trustees on ..24 January 2024....-.....-..........-..................... and sign¢d on its behalf by..
Dr M Bu¢kland- Chair of Trustees
Page 5

Independent Exarniner'5 Report to the Trustees of
Immunodeficienry UK
Independent exllminer's report to the tr￿￿teS of ImmMnodefic5¢n¢y Ul
I report to th¢ Charity tnjstees on my examination of the accounts of Immunodefi¢i¢Th¢y UK (the Charity) for the year
ended 31 March 202).
Re5POT15ibilitie5 and bAsi$ of report
A5 the Charsty trustees of the l-rust you are responsible for the preparation of the accounts in ￿￿rdance with the
requirements of the Charities Act 2011 ('the Act'l.
report in respect of my examination of the Charity's accounts carried oui under Se¢tion 145 of the Act and in carysllg
oiit my examinAtion I have followed all applicable DireLlivThs given by the Cliarity Comjnission uiider Section
145(5)(b) of the Act.
Independent examiner's $tAtem¢nt
F have completed my examination. l Confm that no m*¢ri81 matt¢rs have cotne to my attention in connection with the
examination giving me Ca￿se to beli¢v£ that in any mat¢rial resp¢¢t'.
accounting records wer¢ noi kept in respect of the Charity as required by S¢¢tion 130 of the Aet,. or
the accounts do not a¢cord with those records,. or
the aLeouTht5 do not CQTnply with the applicable requir¢mwits concernints dje fom and content of accounts Set
out in the Charities (Accounts and Reports) Regulations 2008 other than any requirelnent that the accounts give
a true and fair view ifyhich is not a matter considered &8 part of an itldependent examination.
I have no concerns and have come across no other matttTS in ¢onneelion with the examination to which attention should
be drawn in this report in order to enable a proper understanding of the accounts io be reached.
Hazel Day
Tudor John Limited
Niuhtinualc House
46-48 East Street
Epso
Surrey
KT17 IHQ
Page 6

IMMUNODKFICIENCY UK
St4tem¢nt ofFingnei41 Activitie5
for the year ended 31 Mkreh 2023
Period
20.1.21
to
Year Ended
Unrestricted
fund
Restricttd
fvnds
Total
funds
Total
funds
Notes
INCOME AND ENDOWMENTS FROM
DoThations and legacics
88,499
42,655
131,154
100,450
lnvesiment income
115
Total
88,614
131269
100,451
EXPENDrruRE ON
ChAritable Attiviti¢s
SUPPORT
116426
122 240
INCOMEI(EXPENDITURE)
(4.901)
19,744
14,843
(21,789)
RECONCILIATION OF FUNDS
Total funds brought forward
85,670
5,637
101,307
TOTAL FUNDS CARRJED FORIVARD
35.381
116 150
101307
The notes forni part of these financial ststemeots
Page 7

IMMUNODEFICIENCY UK
BAlanee Sheet
31 March 2023
2023
Total
funds
2022
Total
funds
Utsyestricted
fund
Restricted
funds
Notes
CURRENT ASSETS
Debtors
C￿h at bwik
,793
126.057
90,676
119.041
92.469
127.850
12i.003
CREDITORS
Amounts falling due within one y¢aT
{11,7001
(11.7001
(21,0961
NET CURRENf ASSETS
80,769
35.381
116.150
101307
TOTAL A&8ETS LESS CURRENT
LIABILITIES
80.769
i5.381
16,150
101.307
NET ASSETS
80,769
35.381
116.150
101307
FUNDS
Unrestricted funds
Resthcted funds
80,769
35.i81
85,670
15.637
TOTAL FUNDS
116.150
101.307
The fioancial stalemenis were approved by the Board of Trustees aiid authorised for issue on
..24 January 20?4..................................... and were signed on its behalt by..
Bu¢kland- Chair of Trustees
The notes forni part of these fknancial stat¢ments
Page 8

IMMUNODEFICIENCY UK
Notes to the Financial Ststements
for the year ended 31 March 2023
ACCOUNTING POLICIES
BASIS OF PREPARING THE FINANCIAL STATEMENTS
Tlie financial statements of the Chai'ity, which is a public benefit entity under FRS 102, have been prepared in
accordanc¢ with th¢ Chari¢i¢s SORP (FRS 102) 'Ac¢ounting and Reporting by Charities.. Statement of
Recommended Practice applicable to charities preparing th¢ir a￿01}ntS in a¢cordan¢e ivith the Financial
Reporting Standard applicable in the iJK ond Repiibli¢ of Ireland (FRS 102) (effr¢tiYe l January 2019).,
Financial R¢porting Standard 102 'The Financial R¢portill8 Standard applicable in the UK and Republi¢ of
Jreland. and the Charities Act 2011. The financial ststements hav¢ b¢¢n prepared under the hisiorical cost
Gonvention.
These financial statements contain information in relation to the Charity only.
The pre5entati(Trnal curr¢n¢y of these fillan¢ial statements is GBP.
The Charity is a public benefit elltity.
The Charity has taken advaniage of the following disclosure exemptions in preparing these fInancial statements,
as pemiitted by FRS 102 The Finaiicial Reporting Standard applicable in the UK and Republic of Ireland,:
th¢ r¢quir¢ments of S¢ction 7 Statement of Cash Flows.
INCOME
All incotne i5 recognised in the Statement of Financial A¢tivities once the Chartty has entitlement to the fijnds. it
is probable that the income will be ￿CeIved and the atnou]]t can be rneaSur￿ reliably.
EXPENDITURE
Liabilities are recogni5ed a5 expenditure as soon as there is a legal or consiru¢tive obligation cotbmitting the
Charity to that expendtture, it is probable that a transfer of economic benefits will be required in settlement and
the amount of the obligation can be ffleasured reliably. Expenditure 15 accounted for on an accruals basis and has
beeo classifled under headings tliat a88re8ate all cost related to the category. Wh¢r¢ Costs cannot be diT¢rtIy
attributed to particular headings they Iiave bttn allocated to actiwties on a basis ¢onsisi¢nt ivitli the use of
resollrces.
TALITION
The Charity is exetnpt from tsx on its charitable activities.
FUND ACCOUNTING
Unr¢stri¢t¢d fiinds ￿ be used itt aceordartce with the charitable objective5 at the dis¢r¢tioo of the tnist¢es.
Restricted fund5 only be used for particular r¢stri¢t¢d purposes withiTh the objects o( the Charity.
R¢5triclions arise when speeifsed by the doDor or when funds are raised fL)r particularrcstricted purp05e5.
Fiirther explanation of the nature arld putFose of each fund is incliided in the notes to th¢ fioatk¢ial statements.
PENSION COSTS AND OTHER POST-RETIREMENf BENEFITS
The Charity operates a defined Contribution pension scheme. Contributions payable ￿ die Charity's pension
scheme are charged to th¢ Statement of Financial Activities In the period to which they relate.
FINANCIAL INSTRUMENTS
Finall¢ial instrunients are cla55ified and accounted for, ac¢ording to the substance of the ¢ontra¢tUAI
arranueinent. as eitiier financial assets, fjnanctal liabklities or equity insiruments.
Trdde and other debtors
Trade aod other debtors that are ￿ceIVable withlll one year and do not constitute a finan¢ing transa¢tion are
recorded at the undiscounted amount expected to be received, net of any impaimient.
Thos¢ that are receivable after more than on¢ year or ¢onstitut¢ a financing transaciion are recorded initially at
fair valiie less transaction wsts and subsequently at amortised costs. of impairEneTht.
Page 9
continued...

IMIWIUNODEFICIENCY UK
Notes to the FingD¢ial Statements- eonilnued
for th¢ year eDded 31 March 2023
ACCOUNTING POLICIES- contiDued
FINANCIAL INSTRUMENTS
Cash and cash equivalents
Cash and ¢ash eqiiivalents comprise cash at bank and on hand. detnand deposits with banks and othcr short-tcrrn
highly liquid invesbneiits wsth origiiial maturLtKes of three n)onths or les5 and bank overdrafts. In the balance
sheet. bank overdrafts are shown within borrowings or current liabiliiies.
Trade and other creditors
Trade and other Creditors are initially recogTni5ed ai the iransartion price and ate theieafter sttted at amortised
cost using the effective inierest method IwSess the effect oFdis¢ounting wollld be imniaterial. in which case they
are stated at cost.
INVESTMENT INCOME
Period
20.1.21
to
31.3.22
Year End¢d
31.i.23
Deposit account interest
TRUSTEES, RE￿luNERATIoN AND BENEFITS
There were no trnstees, r¢muneration or other benefits for the year ended 31 March 202J nor for the period
ended 31 Marth 2022.
TRUSTEES, EXPENSES
There were no trust¢¢s' expenses paid for the year eT)ded 31 Mareh2023 nor for the period ended
31 MaTch 2022.
CO￿ARATIVEs FOR THE STATEMENT OF FtNAN'CIAL ACTIVITIES
un￿StrIcL¢d
fund
Rrstricted
nds
Total
fiind$
INCOME AND ENDOWTrIEWTS FROM
Donations and Icuacies
9?,249
8,201
100.450
Investmenr income
Totsl
8201
100.451
EXPENDITURE ON
Chthritable activities
SUPPORT
103,liO
19,110
122,240
ET lTriCOMI EIIEXPENDITURE)
{10.880)
(10,9091
121,7891
RECOIYCILIATION OF FUNDS
Total fuiids brought forward
96.550
26,546
123,096
T(¥fAL FUPIDS CARRIED FORIVARD
85.670
101,307
10
continued..

IMMUNODEFICIENCY UK
Notes to the Financial Statements- tontinued
for thc year ended 31 Mslrch 2023
FUNDERS
Below is a breakdown tsf funding recognised in incoine in the fjnaneial period to 31st March 2023..
2023
2022
Pham)ing Teehnologies
AmDel Medical
LFB BiOphannaceuli￿ls
O¢tapliarnta
Biotest
Solaris Health
Ipopi
E Shearsby
CSL Behring
C Shearsby
Renishaw
10,000
5,000
5,000
4,750
3,600
2.000
1,679
1,000
.626
4,351
3,600
950
5QO
In additioii to the aLK)ve restricted funding funds were r¢¢¢iv¢d from CSL Behring of £35,000 {2022 £35.000) to
aid Immunodeficiency Uk to improve knowledg¢ and awareness of primary and sewndary immunodeficieney
at)d support the provision of services for patients. Fund5 were also received from Takeda Ltd of £14,940 to help
support the general runnints costs of Immunodtficiency UK including IT c05ts, w¢bsite and database hostitbgs.
bookkeeping and accountsncy and administrative support.
Non monetary support was also received. this not beell included in the aceounts as donations and
expenditure as it is not Possible to COn5l5tently value the contribution received. Detsils of support is given
below=
CSL Behring
Virtual training session on health technology a55e5sments with the aims to help
Immunodeficiency UK better understand the detwls of the proce$5 and how it Can contribllte and represent
patients effectively. Monetary value of the training session was £488 ex VAT.
T2ked2
Attettdan¢¢ ai the Tak¢dalMaLsd51¢y Mental Health Fi￿t Aid Skills workshop for Patient
Organisations and involvement ill the Wumber IT campaign raising awareness of people living with a rare
disease.
prizer
Immunod¢fi¢iency UK re¢¢iv¢d a consultant honoFariutn of £2￿7 from pr￿eT. The consultation involved
answering a5ynchronou5 0nlin¢ que5tion5 over a twfrweek period about how In￿￿nOdericiencY UK made
provi5itsn for our high-ri5k patients through the cov1￿19 pandemic. This amount has beets incliided withiii
donation5 within these financial 5tatem¢nts.
DEBTORS: AMOUNTS FALLING DUE WITHIN ofiE YEAR
2023
2022
Trade debtors
Other debtors
Prepayments and ￿¢rU¢d income
617
1,250
2.712
1.176
1.793
3.962
Pagell
Contillued...

IMMUNODEFICIENCY UK
Notes to the FitL#lleial Statements- continued
for the year ended 31 March 2023
CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
2023
2022
Trade creditors
T￿ation and social security
Otlier crediror5
3,569
1.594
4.457
15,641
11,700
MOVEMENT IN FUNDS
Net
ovement
in fund$
At
31.3.2i
At 1.4.22
Unrestricted funds
General fund
85,670
14.901)
80,769
R¢strict¢d funds
Btsokleis
Helpline frainittg
Website
DiiTltal campaigtl and reprint of IPOPI
booklets
Mentsl health webinars
Patient ¢vents and support grants
APDS awareness proje¢t
Travel costs
3,424
415
?,332
1,07i
4,497
3,717
1229
{2.103)
1.164
(740)
424
16,648
2.692
6.000
174
3,992
{1,300)
6,000
174
15.637
19.744
TOTAL FUNDS
101 J07
116,150
Page 12
Continued...

IMMUNODEFICJENCY UK
Notes to the FinaDeial Staternents- continued
ror the year ended 31 March 2023
MOVEMENT IN FUIYDS- continued
Net movement in funds. ineluded iti the above are as follow5:
Incoming
resovrces
Resources
expended
Mov¢menr
in funds
Unrestricted fund$
Generai fund
88.614
(93.515)
(4.901}
Re5tritted fuThds
Booklets
Psy¢hology pmjeGt
Helpline Training
W¢bsite
Digital campaign and reprint of IPOPI
booklets
Mellt￿ health webinars
Monthly e-newsletter
Patieiit events and support gfdnts
APDS awareness project
Travel costs
Helpline costs
2.250
5,000
6,000
(1,1771
(5,0001
{2,6981
(2,1031
,073
3J02
(2,1031
1,252
13.626
3,600
{1,992)
{288)
(3,600)
(1,300)
(4,0001
{253)
(740)
13,338
{1,300)
6,000
174
10,000
427
500
42.655
(22911)
19.744
TOTAL FUNDS
lJ1269
116.426)
14.843
CompArativtt for moveTnent in fun<Lq
Net
movemeni
in furtds
At
20.1.21
At
31.322
Unrestricted funds
Gen¢ral fund
96,550
(10,880}
85,670
Rtstricted fund5
Booklets
Helpline Training
Website
Digital campaign and reprint of IPOPI
booklets
M¢ntal health webinars
MoIithly e-newsletter
Patient events and support grants
1,412
2,012
415
(5,4351
3,424
dis
3,3i2
5,767
(2.068)
(2.1441
(3.6001
89}
1.164
3,310
5.454
3.600
4.08l
26.546
10.909
15.637
TOTAL FUNDS
123.096
121.7891
101,i07
Page 13
¢ontinu¢d...

IMMVNODEFICIENCY UK
Note5 to the Fitlancial St#tements- ¢ontinued
for the year ellded 31 March 2023
MOVEMENT IN FUNDS- continued
Comparative net movemertt in funds included in the above are as follows..
Incoming
resources
R¢sources
expended
Movemerht
in funds
Unrtstritted funds
General fwid
92,250
{IOJ,liO)
{10,880)
Restricted fwids
Bookl¢ts
Psy¢hology project
Helpline Trdining
Website
Digital ¢ampaign and reprint of IPOPI
booklets
Mental health webinars
Monthly e-newsletter
Patient events and siipport grant5
3.851
2,500
950
(1,8391
(2.500)
2.012
415
(5.4i5)
(5,435)
(2,068)
12,144)
(4,500)
1891
(2,068)
{2.144)
900
89)
8.201
119.110)
(10.909)
TOTAL FUNDS
100,451
1?2.2401
12l,7891
The funds broiiuht forward reflect those accumulated by the Primary Imfftunodeftciency IPID) UK section of
Gene People (formerly Genetic Disorders UK) which IN'ere transferred into Immunodefi¢ien¢y UK when it
betame its own entity effective froTn 1st April 2021. Those fvnds which were restrictrd at that dat¢ hove been
transferred into their own restricted funds within ￿les¢ a¢¢ounts.
Description of furtds
Bookleis- Funding to cover die cost of printing Copies of five different condition-specific information b¢y)klets.
Psycholtsgy proje¢t- Fllnding siipport, part of a multi-chariry iniiiative, for a clillical psychology position at
Department of Iminunology, Birmin¥ham HeartSands Hobpiial.
Helpline Trainin¥- Fundin¥ 10 Support the Irainino of voliinteers to man the IniTDunodefi¢ienc)' UK helpline.
Monthly e-newsletter
Support for the publi¢*ion of a monthly e-newsletter for Immunodefi¢i¢ncv UK
members covering April 2022- March ?023.
Website- Funds for the d¢velopmeDt of a new web5lte for Iminunodcficiency UK.
Digitsl campaign and reprint of IPOPI materials - Reprinting of IPOPI educational materials and support for a
digital marketing campaisn for World Pl Iveek.
Mental health webinar5- Support for improvin¥ the methial health of ilie immunodeficiency comtnunity.
Patient events and SiTpport grznts- Support for patient events and patient siipport grants.
Activated P13k Delta Syndrome- Development of patient stOTie5 atld APDS inforniation for the website.
Trnvel- funds to cover travel cosis ￿ specifi¢ events and conferences.
Paoe 14
coniinued...

IMMUNODEFICIEf4CY UK
Trlotes to the Financifil Ststements- eontinlled
for the yeAr ended 31 March 2023
EMPLOYEE BKNEFIT OBLIGATiof4S
The total amount recognised as an expense in the year for paymettts made to defined contribution pension
schemes wa5 £4,I18.
io.
RELATED PARTY DISCLOSURES
There were no related party tratLsadion5 for the year ended 31 March 2023.
PagelS

IMMUNODEFICIENCY UK
Detsiled Statement of Finaneial Aetivitits
for the year ended 31 March 2023
Period
20.1.21
Year Ended
31.3.23
31.3.22
INCOME AND ENDOWMEiYrs
Donations legAties
Donations
131,154
100.450
Investment income
Deposit account inttrc5t
115
Tot91 incoming res0￿ree5
131269
100,451
EXPENDITURE
Chxritable Activities
Wages
Social security
Pensions
Sundries
Marketing
Events
58.8?3
2,225
4,118
4.3)8
16,84)
20.847
56.0?2
2.510
3,922
5,561
24,520
19.085
107,?16
111,620
Support costs
Governance costs
Auditors, remuneratio
Profes5i0nal fees
8,760
450
10,690
9,210
10.620
Total resources expended
116,426
122 ?40
Net income/(expeDditurt)
21,7891
Thi5 paue does not forni part of the statutory financial ststements
Page 16

Indtptndent EurniDer'5 Report io the Trwt¢es or
lo)munodefJciency UK
IndtpeDdeDt exAmiDer's ￿POrt to tbe trustee5 of Immunodef￿je￿CY Ul
I report to th¢ Charity trustees on my examination of the accounts of Immunodeficien￿ UK (the Charity) for the year
ended 31 March 202).
Re5POU5ibilitie5 and bAsis of report
A5 the Charsty ¢rustees of the TnLSi YOU are reSF*)nsible for the preparation of the acwwits in accordance with the
requirements of the Charities Act 2011 (Ihe Affl.).
I report in respecf of my examination of the ChaTÉty's accounts carried out under Section 145 of the Act and in caryitlg
out my examination I have ftjltowed all applicable Di￿￿tiOnS given by the Charity Commission under S¢¢tion
145(51(b} of the Act.
Independent eTamaner's st4t¢met)t
I have completed my examination. l ¢onfm no materizl matters I￿ve cotne lo my attention in ronnection with the
examination giving me Ca￿%¢ to believe that in any mat¢rial resp*t:
accounti￿tr records wer¢ not k¢pt in respect of the Charity as requittd by Se¢tion 130 of the A¢¢ or
the accounts do not a¢¢ord with those record5.' or
the accouThts do not COTnply with the applicable requirements Concernin￿ the form and conteni of accounts set
out in the Charitie5 {Accounts and Reports) Regulations 2¢)08 oiher than any requirement that the accounts give
a true and fair view M'hich is LM)i a rnatter eonsidered as psrt of all independeni examination.
I have no concerns and have come across other Tnatters ¢ontheetion with the emmination to wljich attention should
be drawrt in this report in order to enable a proper und¢r51anding of the aceounts io be reached.
Hazel Day
Tudor John Limited
Niuhtinuale House
46-48 East Street
Epso
KT17 IHQ
Page 6