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2023-04-01-accounts

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1st April 2022-
31st March 2023
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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

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Our achievements at a glance

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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:

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
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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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Summer Highlight
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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:

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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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
100
80
60
40
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0
Emotional Support DiagnosisTreatmentWork related BenefitsSignpostingAccess to healthcare AdvocacyPeer to peer support
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Phone &
Email
Phone only
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Professional
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Enquiry
method
Enquirer
Email
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Family member/patient
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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.

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

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

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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 Tudor J(thn Limited Nighiingaje Ho 4￿¥ E&st Str¢¢t Epsom Surrey KT17 IHQ

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 Exmlther 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 Finneial 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 Doations 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 Mreh 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 respt: 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