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← The Polycystic Kidney Disease Charity

2025-03-31-accounts

THE POLYCYSTIC KIDNEY DISEASE CHARITY

Report of the Board of Trustees and Accounts – 1 April 2024 to 31 March 2025

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

ANNUAL REPORT AND ACCOUNTS 2024-2025

CONTENTS

REFERENCE AND ADMINISTRATIVE INFORMATION ............................................................................. 3 TRUSTEES ANNUAL REPORT & DIRECTORS’ REPORT ........................................................................ 4 WELCOME FROM THE CHAIR ................................................................................................................ 4 OBJECTIVES AND AIMS ......................................................................................................................... 5 About PKD ........................................................................................................................................ 5 Charitable objects ............................................................................................................................. 6 Our objectives and activities ............................................................................................................ 6 PERFORMANCE AND ACHIEVEMENTS DURING 2024-25 ...................................................................... 8 Research activities during 2024-25 ................................................................................................... 8 Support services for people, carers and families affected by PKD .................................................. 10 PKD App .......................................................................................................................................... 14 PKD awareness/advocacy activities ................................................................................................ 15 Community involvement in the work that we do ........................................................................... 18 Community fundraising .................................................................................................................. 18 Pro bono support ............................................................................................................................ 19 2025-26 plans ..................................................................................................................................... 20 STRUCTURE, GOVERNANCE AND MANAGEMENT .............................................................................. 21 Constitution .................................................................................................................................... 21 Trustees .......................................................................................................................................... 21 Governance and administration ..................................................................................................... 21 Risk Management ........................................................................................................................... 21 Fundraising ..................................................................................................................................... 21 FINANCIAL REVIEW ............................................................................................................................. 22 Independent Examiner's Report to the Trustees of the Polycystic Kidney Disease Charity ............ 23 STATEMENT OF FINANCIAL ACTIVITIES - 1 April 2024 TO 31 MARCH 2025 ....................................... 24 BALANCE SHEET AT 31 MARCH 2025 .................................................................................................. 25 NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025 ............................ 27

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

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Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

REFERENCE AND ADMINISTRATIVE INFORMATION

Principal address and registered office:

86-90 Paul Street London EC2A 4NE

Tel: 020 7387 0543 Email: info@pkdcharity.org.uk pkdcharity.org.uk

Ms Sanela Becar (Lay Member) Professor Daniel Gale Dr Richard Sandford Professor John Sayer Dr Manish Sinha Professor David Wheeler

Chief Executive

Miss Alison Taylor (appointed September 2024)

Polycystic Kidney Disease Charity

(Also known as the PKD Charity) Registered charity in England and Wales Number 1160970 Registered charity in Scotland Number SC047730 A company limited by guarantee Registered company in England and Wales Number 9486245

Patrons

Professor Albert Ong Dr Anand Saggar Dr Richard Sandford Professor Patricia Wilson

Professional advisors

Bankers

Directors* and Trustees who served during the year and to the date of this

report

Mr Alan Greenberg (Chair) Mr Idriz Adedoja Mr Raj Johal Ms Rebecca Murphy-Peers Mr Jon Rees Mrs Karen Stapleton Mr Adrian Tinsley Professor Patricia Wilson Mr Alexander Vickerman

Research Advisory Board

Professor Patricia Wilson (Chair)

CAF Bank Ltd 25 Kings Hill Avenue West Malling ME 19 4JQ

Accountants

Peters Elworthy & Moore Salisbury House Station Road Cambridge, CB1 2LA

Independent accounts examiner

Charles Pickin Fellow of Institute of Chartered Accountants in England and Wales Harrison Jasper Ltd Florance Lane, Groombridge, TN3 9SH

*The directors of the charitable company (the charity) are its trustees for the purpose of charity law.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC2A 4NE

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Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

TRUSTEES ANNUAL REPORT & DIRECTORS’ REPORT

The Trustees, who are also directors of the Charity for the purpose of the Companies Act, present their annual report and financial statements of the Charity for the year ended 31 March 2025. The accounts comply with the Charities Act 2011; Companies Act 2006 and the trust deed and follow the recommendations in Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019).

The Trustees confirm that they have complied with the duty in section 17 of the Charities Act 2011 to have due regard to the public benefit guidance published by the Charity Commission in determining the activities undertaken by the Charity.

WELCOME FROM THE CHAIR

This past year has been one of deep transition and reflection following the sad passing of Tess Harris shortly before the start of the reporting period. Tess was not only our CEO but the driving force behind much of what we achieved. Her loss was felt profoundly – both emotionally and operationally.

Our immediate challenge was to ensure continuity and maintain our core services for the PKD community while preparing for a future without Tess’s leadership. I am proud to say that, thanks to the dedication of our staff and trustees, we continued to deliver a full range of services at a high standard. I believe Tess would have been deeply proud of what we accomplished together.

Following a rigorous recruitment process that attracted over 150 applicants, we were delighted to appoint Alison Taylor as our new Chief Executive in September. Alison stood out as an exceptional candidate, and since joining, she has brought clarity, energy, and renewed momentum to the organisation. Her leadership has already helped to stabilise operations and strengthen our strategic focus, and I am confident that she will guide us to even greater impact.

A particular highlight this year has been the progress of the PKD Research Partnership , our collaborative initiative with Kidney Research UK. This ambitious programme seeks to unite and accelerate PKD research efforts across the UK - with the ultimate goal of delivering innovative treatments and transforming the lives of those affected by PKD. Engagement from healthcare professionals, researchers and industry partners has been exceptional, and we are now in a strong position to fully launch and drive this initiative forward.

In the pages that follow, you will read more about the charity’s work and impact during 2024–25. None of this would be possible without the generosity of our community: patients and families, friends and colleagues, those who give in memory of loved ones lost to PKD, healthcare professionals, researchers, funders, partners, volunteers, trustees, and our dedicated staff. We are deeply grateful to each and every one of you.

Alan Greenberg, Chair, Board of Trustees Date: 17[th] December 2025

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

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Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

OBJECTIVES AND AIMS

The Polycystic Kidney Disease (PKD) Charity is the only UK charity solely dedicated to improving the lives of children, adults, families, and carers affected by polycystic kidney disease (PKD). The Charity was formed in 2000 by a PKD patient and a genetics consultant. Throughout the past 25 years, most trustees and staff have been either PKD patients or family members.

About PKD

PKD is an incurable, systemic genetic condition that causes kidney failure and damages other organs. There are two forms of PKD: autosomal dominant polycystic kidney disease (ADPKD), the most common inherited kidney disease and fourth cause of kidney failure worldwide; and the rare autosomal recessive polycystic kidney disease (ARPKD).

The prevalence of ADPKD and ARPKD is approximately 1 in 1,000 and 1 in 20-40,000 respectively. This means that each year, of the 800,000 babies born each year in the UK, 800 could have ADPKD and 20-40 could have ARPKD. As an inherited condition, PKD affects not only the individual but also their immediate family. It’s a lifelong condition that can start to present even before birth.

There are approximately 7,000 adults with PKD were receiving treatment for kidney failure – accounting for 1 in 10 of all adults in the UK on dialysis or with a kidney transplant.

ADPKD – the more common form of PKD

ADPKD causes multiple fluid-filled cysts to develop, grow and multiply from conception in both kidneys resulting in kidney growth and progressive kidney failure. In many patients, cysts also form in the liver, pancreas and other organs. Both kidneys can grow immensely, up to 100 times normal size, which can have an impact on body shape. The brain and heart can also be damaged. Individuals with ADPKD will often have directly affected family members, parents and siblings, sometimes over several generations.

Most patients with ADPKD will have kidney failure by age 60 and will need kidney replacement therapy (KRT) to stay alive. KRT involves either dialysis or (if feasible) a kidney transplant. Some people will require nephrectomies (kidney removal) due to organ size and have frequent disabling, painful cyst infections that may need surgical intervention. Over 20 adults annually will also need a liver transplant owing to massively cystic livers. Some families are prone to brain aneurysms, which can fatally rupture if not discovered and treated. Acute and chronic pain is common throughout life. As ADPKD progresses, individuals experience complications such as high blood pressure, infections, bleeding, bowel and bone disorders, gout and kidney stones.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

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Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

There is one disease-modifying treatment. However, this is not available to all patients, has modest efficacy and challenging side effects. Read more about ADPKD on the PKD Charity website.

ARPKD is rare and often diagnosed during pregnancy. Unfortunately, 1 in 3 babies will die in the first week of life owing to the rapid growth of cystic kidneys preventing lung development. The babies who survive sometimes experience early kidney and liver failure. They may need lifesaving dialysis before transplant and about a third have impaired growth during childhood. Some children may need kidney or liver transplants in later life. Despite this, many children do survive to adulthood with mild forms of ARPKD, although their kidneys and livers can be impaired. ARPKD patients frequently have very high blood pressure and are prone to liver-related problems such as bile duct infections and enlarged spleens. See Image 2 of Hazel who is frequently unwell from ARPKD symptoms, affecting her ability to enjoy a normal childhood. There are no treatments other than symptomatic. Read more about ARPKD on the PKD Charity website.

Charitable objects

To promote health and to relieve those persons suffering from or affected by PKD with a view to improving their conditions of life, in particular but not exclusively by:

Our objectives and activities

Research

Our aim is to support and fund ADPKD and ARPKD research in the UK. As a small charity, historically we have focussed on funding small research projects up to £15,000 each and contributing towards PhD studentships. To date, since 2008, we have awarded over £800,000 to research. During the 202425 year the trustees have made the decision that most research funding will now be channelled through the PKD Partnership, a joint initiative established by the charity in collaboration with Kidney Research UK when it officially launches in 2025-26.

We publish details of funded research and outcomes on the Charity website and include in our regular eNews and printed newsletter.

We participate in PKD research groups and networks in the UK and internationally.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

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Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

Information, awareness, and advocacy

ADPKD is the most common inherited kidney disease, yet few people have heard of it and awareness amongst GPs is known to be particularly low. ARPKD is rare and diagnosis/prognosis is a challenge, especially in pregnancy.

We produce and publish evidence-based information about PKD in collaboration with medical experts and patients which is available online and in print. We have PIF TICK accreditation and are designated as a ‘trusted health care information creator’ by the Patient Information Forum.

We organise frequent educational events on all aspects of PKD, with medical and health professional speakers, aimed at helping patients/carers be more knowledgeable, feel more confident and able to cope.

We represent the views and voices of patients, families and carers to UK healthcare professionals, researchers, the NHS, policy makers and the media. We educate pharmaceutical firms with an interest in PKD to ensure that they understand patients’ experiences and needs. Where appropriate, we work in partnership with other charities and umbrella groups, to raise awareness about PKD and its impact on individuals and families.

Support

Being diagnosed with PKD is usually a shock, even if there are known family members with the condition. People report feeling isolated and overwhelmed by the health implications and have concerns for their own future, their children and family members.

We want everyone affected by PKD to have the best quality of life, despite the complications and sometimes life-threatening nature of PKD.

We support patients and carers at every stage of their life with PKD. We provide a range of community services offering practical and emotional support, information and advice including: a helpline run by people with direct experience of PKD, educational events, individual befriending, webchat /messaging, meetups, workshops, and moderated online Facebook groups.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

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Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

PERFORMANCE AND ACHIEVEMENTS DURING 2024-25

Our long-term goals are:

In particular, in 2024-25, we aimed to:

Research activities during 2024-25

PKD Charity and Kidney Research UK partnership

This year, we are proud to continue our partnership with Kidney Research UK to drive forward research, innovation, and treatments for the PKD community. The PKD Partnership aims to advance scientific understanding of polycystic kidney disease and accelerate the development of innovative therapies. By combining collaborative research, cutting-edge technology, and meaningful patient engagement, we are working to transform the outlook for people living with PKD—delivering hope and practical solutions for a brighter future.

Our long-term goal is to bring forward treatments that improve quality of life, delay or prevent the need for dialysis or transplantation, and help reduce the burden on healthcare systems.

During the year, we made strong progress, with growing engagement and support from healthcare professionals, researchers, and industry partners. Important steps were also taken to strengthen fundraising, governance, legal, and operational frameworks. We were delighted to appoint Lesley Woolnough as the project’s lead, ensuring dedicated leadership as the initiative moves into its next phase.

Looking ahead, work is progressing at pace as we prepare to formally launch the PKD Partnership to the wider community and open our first research funding round in 2025–26.

Research grants

The PKD Charity trustees approved the following research grant funding during the year:

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

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Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

Progress report on the supply of BioResource samples for PKD research (UK)

The BioResource contains hundreds of cell tissues and fluid-based samples donated by ADPKD and ARPKD patients at various stages of kidney function decline. Samples from this unique collection have been provided to the majority of major PKD research centres in the UK. Importantly, this has also helped encourage collaborations between groups and allow investigators from other research fields to expand their studies to include PKD projects.

Professor Patricia Wilson, who curates the BioResource, reported that in a 12-month period:

Patient involvement

We were asked to support research projects and invite our community to provide feedback on a variety of research proposals. During the year we received more approaches than ever before, not only to support patient involvement in research into PKD, but also to provide patients to sit on steering groups for major new projects which is hugely encouraging. Our Patient Involvement and Engagement Officer coordinates aspects of this work, finding and supporting participants. We are indebted to the increasing numbers of patients who are volunteering to take part in these projects and over the coming year we will be investing more resources to support these initiatives.

It was also great to be able to highlight new research opportunities for our community to become involved with. We know that the patient and research community acting together will further our understanding in PKD and will help on the journey to finding new treatments.

Other research activities

We participated in and supported UK and relevant international research activities:

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

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Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

research landscape.

Support services for people, carers and families affected by PKD

During 2024-25, we continued to support our community through remote and face to face service delivery. We used our website, online channels and platforms such as Zoom, Teams, Facebook and other social media to provide support and information alongside in person meetings and events.

Phone and Facebook support

Our 0300-phone helpline was available for those feeling worried or emotional or needing information. The number of callers remained at approximately one caller per day on average. We logged the details of nearly 355 incoming calls during the year and categorise them by type: they are split equally between ‘Support’, ‘Questions’, and ‘Information’

Additionally, we respond to 1 to 2 messages a day posted on our Facebook groups or sent via direct message or text. We have help from our groups’ volunteer moderators and staff for out of hours support.

“ I just want to say thank you too for all the charity's support. I can think of one time especially I phoned the helpline, and it made so much difference to talk to someone that understands”.

We manage and moderate 3 private UK-only Facebook groups with approximately 3,700 members. We are fortunate to have the support of trained volunteers who assist staff with moderation and peer support.

Support group meetups

We held 35 meetings during the year either in-person or via zoom. Our existing location-based groups were held in London, Bedfordshire, Norfolk, NE England and Wales. During the year we were delighted to launch new groups in Herefordshire, Manchester, Hampshire, Liverpool, Wiltshire and

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

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Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

online support group for young adults. We are indebted to the fabulous volunteers who lead the groups supported by our Support Servies Manager. We look forward to expanding our support groups to other areas in the country in 2025-2026

The support groups are supplemented by online sessions on particular topics where small numbers of people can meet and talk through issues that are affecting them at specific stages in their journeys. Anyone from across the UK can join these group sessions. During the year these included group meetings on Low clearance and Tolvaptan treatment.

“I didn’t feel alone - it’s the most amount of people in one room with PKD that I’ve ever met - it’s the most amount of support I’ve ever felt”.

“I dont always want to discuss the disease with friends or other family members - its important to have a forum to express ”

Information and Support Days for patients and families affected by ADPKD

We held two ADPKD Information and Support Days during the year in Swansea and Birmingham, 272 people registered for the events with 196 people attending. We are indebted to the 15 medical professionals from up and down the country who prepared talks and gave up time over precious weekends to make the events possible.

We were delighted to host our very first PKD Charity event in Wales, hosted by Consultant Nephrologist Dr. Aled Williams and Clinical Nurse Specialist Melanie Pickman, with support from a further 8 speakers. The programme covered a wide range of topics, from the basics of PKD and its genetics, through to dialysis options and the psychosocial aspects of ADPKD, including managing the emotional impact of the condition.

To strengthen community connections, we welcomed Welsh Kidney Charities, Kidney Wales, and Popham Kidney Support to exhibit at the event—helping to demonstrate unity and build support for PKD patients across the region.

“ This day event was amazing and helped me realize that I am not alone and that there was lots of other people just like me in the same boat. “

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

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Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

Our second event was held in Birmingham, the last time we were there was in 2017, so it was good to be back. Expertly hosted by Dr Lukas Foggensteiner and Sarah Borrows, supported by the amazing Birmingham team. This was the first PKD charity event that the vast majority of attendees had taken part in and we had excellent feedback. We held presentations in the morning on topics which included genetics, tolvaptan, and kidney transplants and attendees were given the opportunity to attend their choice of workshops in the afternoon. Attendees could choose from sessions related to staying fit and active with PKD, dialysis options, and managing pain in PKD.

“The event was well run; knowledgeable presenters with very good information and a beautiful venue.”

Online events

During the year we held 6 online events and invited medical experts to give talks on specific topics that we had identified as needed by our community. The live evening sessions were incredibly well received and attended by 474 PKD participants. We are indebted to the experts who gave of their time to inform and support the community during the year.

Topics included

“Many thanks for organising the aneurysm talk tonight. It was superb. It was pitched at the just the right level and was informative, reassuring and honest.”

“I have learnt so much from these sessions and the questions others have asked. Such a helpful and safe environment and very much needed”

“As someone new to the world of PKD, this has been a real eye opener, and I can’t imagine not having more of this kind of support as I progress in my PKD journey. This is invaluable.”

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

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Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

The benefit of the talks stretches far beyond the attendees able to join the live sessions. Talks from the online information events are recorded and are available on our website and YouTube channel. A further 3,842 people accessed the live sessions broadcast in the year and almost 14,000 users accessing our historic content from previous years.

“Thank you for steering me in the direction of the recorded talks, which are delivered by a variety of excellent kidney specialists, each person taking a slightly different angle of kidney disease, depending on their areas of expertise . “

Living Well with PKD Workshops

With the assistance of a Clinical Kidney Psychologist and Psychotherapist, we delivered 10 online workshops on ‘Living Well with PKD’. Sessions explored pain, anxiety, diagnosis, building mental flexibility relationships, body image and self-criticism. The workshops were held over 90 minutes via a Zoom meeting with capacity limited to 10.

Health information for patients and families

Providing accurate, clear and up to date information to the PKD community is a central focus of our mission. Information is key for patients and families to understand PKD, be able to support their own needs and be truly involved in care decisions. We provide information via events, our website, printed publications and through the PKD App.

We have Patient Information Forum PIF TICK accreditation, which means that a reader can be assured that what they are reading, watching or listening to is evidence-based, understandable, jargon-free, up-to-date and produced to the best possible standard. During the year we began a major update cycle of our publications with the kind support of a range of medical professionals and our lay review panel.

All the fact sheets are available on our website, and we print booklets where required. Our website had an increase in users and page views over the last 12 months with 20% increase in users and 16% increase in page views.

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

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Polycystic Kidney Disease Charity

Annual Report and Financial Statement for the year ended 31 March 2025

PKD App

The PKD App was launched in 2022 in partnership with patients and professionals with support from our developer Expert Self Care Ltd. The app is free to download on Apple and Google stores and requires no registration. No personal data is collected.

Android Google Play: PKD App iPhone App Store: PKD App

We involved our PKD community through focus groups, editorial boards and rounds of content review, with every step logged for PIF TICK accreditation purposes.

The PKD App:

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

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Polycystic Kidney Disease Charity

Annual Report and Financial Statement for the year ended 31 March 2025

During the year the app was downloaded by 671 people with nearly 10,000 page views. We are pleased to see that the App store rating by users in 5/5.

“It’s so easy to navigate and includes the essential pieces of information as well as signposting to more detailed information should I want to know more. I think for those who are newly diagnosed, or have experienced disease progression or those who are struggling with their symptoms it is a very useful tool”

PKD awareness/advocacy activities

Throughout the year we shared patient stories under the banner of PKD Voices and regularly aligned our content with national campaigns run by health organisations and other charities.

Through social media posts on our Facebook page (10,400 followers), groups, Twitter/X, LinkedIn, Instagram social channels we continued to raise awareness of PKD, kidney health and our services.

We issued 2 printed full-colour newsletters to approximately 3,000 households and posted each online.

We published 31 e-newsletters in the year to over 5,000 individuals to keep the community informed. The e-news list grew by 16% over the previous year.

The British Transplant Games , a powerful tribute to organ donors, their families and the amazing resilience of transplant patients, was hosted by Nottingham in August 2024. Over the two days we attended, we connected with PKD families, old and new, sharing information and cheering them on as they competed in the games.

PKD Awareness Week in September. This year we focused on raising awareness of the key symptoms of PKD and debunking common myths, such as the misconception that PKD affects more women than men. The campaign was further amplified by the support of other kidney charities, who helped promote PKD awareness throughout the week. The campaign resulted in high reach and engagement.

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

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Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

This year’s World Kidney Day campaign focussed on celebrating Kidney Heroes - those friends, family members, healthcare professionals, organ donors, and even pets who support kidney patients. The campaign encouraged people to nominate their own heroes for the Kidney Charities Together (KCT) World Kidney Day award. Leading the campaign were the powerful audio stories of PKD patients: Asif, who honoured his employer for their support during his dialysis and transplant journey, and Martin, who received a life-saving kidney donation from his great-niece, Alex. By featuring these stories, the campaign amplified the voices of PKD patients.

Important facts and stats, plus ways to get support, manage kidney health, and take early action if at risk of kidney disease were also heavily featured and helped us reach patients with little knowledge of our work.

We promoted and aligned our activity with other Awareness days/weeks, including Rare Disease Day in February 2025. The focus this year was on the benefits of care coordination for individuals with rare conditions, their caregivers, parents, relatives, healthcare professionals, and healthcare budgets. In a series of videos, young mum Aria candidly discussed the challenges of being mum to a child with a rare, incurable disease.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

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Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

Advocacy

In June 2024, we attended UK Kidney Week, the UK Kidney Association's primary professional kidney conference. The event was a vital opportunity to connect with medical professionals and introduce our charity to new doctors and nurses.

Support Manager Susan presented an abstract on our App survey, while our Chair Alan gave a presentation

honouring Tess Harris, highlighted the charity's achievements, and shared our future plans.

Throughout the year, members of staff attended and participated in conferences, workshops and events relevant to PKD, kidney, liver, genetic and rare diseases. These included UK Kidney Week Conference , the ANN UK (Association of Nephrology Nurses in the UK) Annual Conference and the British Association of Paediatric Nephrologists/Paediatric Nephrology Nurses Group Conference. The Charity continues as a member of Kidney Charities Together (KCT) working collaboratively to be the single powerful voice for all NN Ls PKG: i kidney patients in the UK. Other member charities include Kidney Care UK, Kidney Research UK, the National Kidney Federation, Kidney Wales, the UK Kidney Association.

The Charity is a member of several UK umbrella organisations representing the interests of people with long-term conditions (LTC) or genetic diseases, including Genetic Alliance UK, the Health and Social Care Alliance Scotland, Rare Disease UK, the Kidney Health Partnership and the Specialised Healthcare Alliance . The Charity engages with these organisations to ensure that our aims and activities are known, recognised, and considered. The Charity regularly inputs into national consultations facilitated by these umbrella bodies.

The Charity is a member of the Ciliopathy Alliance , which brings together patients, families, doctors, and scientists with the aim of improving the quality of life for children and adults affected by ciliopathies – primarily genetic diseases caused by defects in the function and structure of cilia (microscopic organelles found in every human cell and vital to development). PKD is an important ciliopathy with ADPKD having the largest patient cohort. There is a growing interest in studying a cluster of conditions called renal ciliopathies, which include ADPKD and ARPKD.

The Charity is a member of the Kidney Patients Involvement Network (KPIN), which is committed to increasing the number of patients engaged with initiatives and harness enthusiasm across a wider kidney patient and carer population, improving involvement and engagement from minority and under-served groups.

The Charity is a member of the ABPI (Association of British Pharmaceutical Industry) Patient Organisation Forum . The forum meets regularly to discuss issues such as joint working between patient organisations and pharmaceutical companies.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

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Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

The Charity is a founder member of PKD International (PKDI), a global alliance of patient groups supporting people affected by all forms of PKD. More information here: www.pkdinternational.org

The Charity is a member of EURORDIS , the European umbrella organisation of patient groups representing adults and children with rare and genetic diseases.

The Charity is a founder member of FEDERG , the European Federation of Patient Groups representing rare and genetic renal diseases.

Community involvement in the work that we do

Our PKD community plays a vital role in the work that we do. We involve them in many aspects – directly, through volunteering, speaking about their personal experience on webinars and education events; or indirectly, by asking for their feedback, taking part in consultations and surveys.

We have approximately 93 (2024: 91) active loyal volunteers and we hugely appreciate the time and commitment they willingly give. They helped us during the year with reviewing health information, providing patient perspectives for research projects, moderating our Facebook groups, hosting support group meetings and taking part in consultations. Their sharing of personal experiences has been invaluable to others going through the PKD patient journey.

We also thank the healthcare professionals, scientists and others who gave their time to speak at the patient information events and wrote or reviewed health information materials.

Community fundraising

We thank all our wonderful fundraisers who supported the Charity’s work during 2024-25. They walked miles, ran marathons, organised garden parties, magic shows and plant sales, skydived, shaved their heads, boxed, fundraised at school, work and at home. These diverse events showcased the endless creativity and commitment of our community to raise funds to ensure that PKD Charity can continue to support people affected by PKD and fund life-changing research. 2024-2025 was a fantastic year for team PKD, with a huge number of varied challenges undertaken to support the work we do. Our supporters truly are inspiring.

The year kicked off in style at the London Marathon, where Team PKD had seven runners among the 65,500 participants. Together, they raised over £15,000 to support PKD research and advocacy. September brought more success with the Great North Run in Newcastle, where 17 runners took on the iconic half marathon. Their dedication and hard work were rewarded with over £11,500 raised. Twelve participants also chose to support the charity by taking part in events in the Ultra Challenge series. With various events, from the Isle

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Page 18/39

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

of Wight Challenge in May to the London Winter Walk in January. This series remains popular for its flexible distances and funding options, raising a total of £6,457, adding to the year’s fantastic fundraising achievements.

In addition to these flagship events, supporters have shown immense creativity and dedication in their own fundraising initiatives. Here are just some examples.

These large contributions are complemented by many others who raised funds in their own ways and those who give direct donations whether that is through regular giving or one-off donations demonstrating the strength of PKD’s supporter community.

It was also a good year for corporate support to the charity. Thrive Tribe chose PKD charity as their fundraising partner for 2024-25. During the course of the year they hosted various fundraising activities, including dress-down days and a staff away day. They also entered three runners in the Great North Run and plan to take part in the Brighton Marathon next April. Interpath was also a great supporter raising £3,234 via the Yorkshire 3 Peaks Challenge in June, followed by a corporate sports day in September, adding another £3,000.

Thanks to each and every participant, fundraiser, and supporter, 2024-25 has been a year of incredible achievements for Team PKD. Without these endeavours and funds, we would simply be unable to the work that we do.

Grant fundraising

The National Lottery Community Fund awarded the final part of the 5-year grant for the Positive Peers Programme.

Grants from other Trusts and Foundations are shown in the Statement of Financial Activities.

Pro bono support

We acknowledge and thank:

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Page 19/39

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

2025-26 PLANS

Our long-term goals are:

In 2025-26, we will:

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Page 20/39

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

STRUCTURE, GOVERNANCE AND MANAGEMENT

Constitution

The Polycystic Kidney Disease Charity is a company limited by guarantee on 12 March 2015, Company Registration No 9486245 and is registered for charitable purposes with the Charity Commission, Charity Registration No. 1160970. The Charity is governed by its Memorandum and Articles of Association. In the event of the Charitable Company being wound up, company members are each required to contribute an amount not exceeding £10.

Trustees

Trustees, who are also directors of the Charitable Company, are recruited by open advertising and appointed by the other trustees. Trustee appointments are for three years, after which trustees retire but are eligible for re-appointment for a further two terms of three years.

They are unpaid volunteers and may claim reasonable out of pocket expenses. The charity’s activities are planned and carried out by the trustees. All trustees are required to declare relevant interests and may be required to withdraw from trustee meetings.

All trustees are encouraged to develop their trusteeship skills and to attend external conferences and events relevant to PKD and charity governance.

Governance and administration

The trustees met 5 times online during the year to review the charity’s performance, determine and approve the operating plan and budget. The trustees delegate review of grant applications to the PKD Charity Research Advisory Board (RAB) who met virtually to review grant applications when required. The trustees delegate the management of charitable activities and administration to a small team led by the Chief Executive. The trustees monitored performance at trustee meetings; the Chair has regular phone and face-to-face meetings with the Chief Executive.

Risk Management

The trustees have overall responsibility for ensuring that the charity is managing risk in a professional, responsible and constructive manner. This has involved identifying risks the charity may face, assessing potential impacts and seeking to minimise them. Material risks for the charity include key dependency on its Chief Executive, risk of loss of supporters, managing regulatory changes, and maintaining a surplus. The trustees regularly review the charity’s risk management policies, which include data protection and safeguarding – the charity is registered with the Information Commissioner and requires trustees, staff and some volunteers to undertake Adult Safeguarding Courses. The charity is exposed to financial risks, such as loss of income, which it aims to mitigate by maintaining sufficient reserves while continuing to diversify fundraising, for example, by increasing grant funding.

Fundraising

The charity undertakes most of its fundraising activities in-house and used a consultant solely for the purposes of grant applications. The charity is a member of the Fundraising Regulator , providing

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Page 21/39

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

reassurance to supporters, members of the public and other donors, and promoting best practice in fundraising. The charity received no complaints about its fundraising practice in this financial year.

The charity is registered with the Information Commissioner and all supporters’ and stakeholders’ personal data are maintained securely in accordance with the GDPR (2018).

FINANCIAL REVIEW

Performance

During the 12 months to 31 March 2025, the charity’s income was £347,837 (2024: £453,814).

Expenditure on raising funds as a percentage of total incoming resources was 29% (2024: 17%). Research expenditure was £40,649 (2024: £67,212). The Charity’s expenditure on charitable activities across patient support, awareness and education was £182,043 (2024: £149,697), which included information days, telephone support, online/chat support and expenditure on the peer support service.

In total, the Charity expended £377,099 (2024: £332,109), resulting in outgoing resources for the year of £29,262 (2024: incoming resources of £121,705). Total fund balances at the year-end were £391,546 (2024: £420,808) and all funds maintained a surplus position at the year-end (Note 18).

Public Benefit

All charitable activities are undertaken to further charitable purposes for public benefit. The trustees confirm they have referred to the guidance contained in the Charity Commission’s general guidance on public benefit when reviewing the charity’s aims and objectives and in carrying out and planning current and future activities.

Reserves

The Charity maintains a Reserves Policy to hold reserves equivalent to between 3-6 months’ ongoing expenditure, after covering current liabilities. As at the year end, the Charity had undesignated free reserves of £301,564 (2024: £203,248), equivalent to 9 months´ total expenditure (2024: 6 months). The trustees considered that the Charity has sufficient reserves at the year-end and are of the view that the Charity continues to be a going concern.

Approved by the Trustees and signed on their behalf by:

Date: 17[th] December 2025

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Page 22/39

Polycystic Kidney Disease Charity

Annual Report and Financial Statement for the year ended 31 March 2025

Independent Examiner's Report to the Trustees of the Polycystic Kidney Disease Charity

Independent examiner’s report to the trustees of The PKD Charity

I report on the accounts of the company for the year ended 31 March 2025, which are set out on pages 27 - 39.

Respective responsibilities of trustees and examiner

The trustees (who are also the directors of the company for the purposes of company law) are responsible for the preparation of the accounts. The trustees consider that an audit is not required for this year under section 144(2) of the Charities Act 2011 (the 2011 Act) or under Regulation 10 (1)(a) to (c) of The Charities Accounts (Scotland) Regulations 2006 (the 2006 Accounts Regulations) and that an independent examination is needed. The charity is required by company law to prepare accrued accounts, and I am qualified to undertake the examination by being a qualified member of Institute of Chartered Accountants in England and Wales. Having satisfied myself that the charity is not subject to audit under company law and is eligible for independent examination, it is my responsibility to:

Basis of independent examiner’s report

My examination was carried out in accordance with the general Directions given by the Charity Commission and is in accordance with Regulation 11 of the Charities Accounts (Scotland) Regulations 2006. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts and seeking explanations from you as trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit and consequently no opinion is given as to whether the accounts present a ‘true and fair view’ and the report is limited to those matters set out in the next statement.

Independent examiner’s statement

In connection with my examination, no matter has come to my attention:

Charles Pickin

Fellow of Institute of Chartered Accountants in England and Wales Harrison Jasper Ltd, Florance Lane Groombridge TN3 9SH

Date: 16[th] December 2025

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Page 23/39

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

STATEMENT OF FINANCIAL ACTIVITIES - 1 APRIL 2024 TO 31 MARCH 2025

(INCORPORATING INCOME AND EXPENDITURE ACCOUNT) FOR THE YEAR ENDED 31 MARCH 2025

Notes
Income from:
Donations grants and legacies
3
Charitable activities
4
Other trading activities
5
Investment income
6
Total income
Expenditure on:
Cost of fundraising
7
Non-charitable trading activities
7
Total
Research and grants
8
Awareness and education
Patient support
Depreciation
14
Total
Other expenditure
Governance costs
9
Total expenditure
Net income / (expenditure) for the year
Fund balances brought forward at 1 April
18
Net incoming resources for the year
18
Transfers between funds
18
Fund balances carried forward
18		 Restricted
Funds
2025
£
41,655
-
-
-
41,655
-
-
-
40,649
-
41,655
374
82,677
-
82,677
(41,022)
50,275
(41,022)
80,747
90,000		 Unrestricted
Funds
2025
£
291,207
-
6,388
8,587
306,182
97,996
4,266
102,262
-
66,231
73,783
-
140,014
52,145
294,421
11,761
370,533
11,761
(80,747)
301,546		 Total
2025
£
332,862
-
6,388
8,587
347,837
97,996
4,266
102,262
40,649
66,231
115,438
374
222,692
52,145
377,099
(29,262)

420,808
(29,262)
-
391,546		 Total
2024
£
445,990
-
5,559
2,265
453,814
78,446
5,062
83,508
67,212
38,926
108,803
1,968
216,909
31,692
332,109
121,705
299,103
121,705
-
420,808

The Statement of Financial Activities includes all gains and losses in the year and therefore a statement of total recognised gains and losses has not been prepared.

All of the above amounts relate to continuing activities.

The notes on pages 27 - 39 form part of these financial statements.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Page 24/39

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

BALANCE SHEET AT 31 MARCH 2025

Notes
FIXED ASSETS
Tangible assets
14
CURRENT ASSETS
Debtors
15
Cash at bank
Total current assets
Liabilities
Creditors: Amounts falling due
within one year
16
NET CURRENT ASSETS
Total
assets
less
current
liabilities
Creditors: Amounts falling due
after more than one year
17
NET ASSETS
The funds of the Charity:
Unrestricted funds - Designated
18
Unrestricted funds - General
18
Restricted funds
18
TOTAL FUNDS		 2025
£
1,979
25,043
499,336
524,379
134,812
389,567
391,546
-
391,546
-
301,546
90,000
391,546		 2024
£
-
22,141
599,339
621,480
185,988
435,493
435,493
14,684
420,808
167,285
203,248
50,275
420,808

The company was entitled to exemption from audit under section 477 of the Companies Act 2006.

The members have not required the company to obtain an audit of its accounts for the year in question in accordance with section 476 of Companies Act 2006.

The directors acknowledge their responsibilities for complying with the requirements of the Act with respect to accounting records and the preparation of accounts.

The financial statements have been prepared in accordance with the provision applicable to entities subject to the small companies’ regime.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Page 25/39

Polycystic Kidney Disease Charity

Annual Report and Financial Statement for the year ended 31 March 2025

The financial statements were approved by the Trustees and authorised for issue and signed on their behalf by:

Date: 17[th] December 2025

The notes on pages 27 - 39 form an integral part of these accounts.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Page 26/39

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025

1. GENERAL INFORMATION

The Charity is a company limited by guarantee and has no share capital. In the event of the Charity being wound up, the liability in respect of the guarantee is limited to £10 per member of the Charity. Its registered office is 49-51 East Road, London, N1 6AH.

The significant accounting policies applied in the preparation of these financial statements are set out below. These policies have been consistently applied unless otherwise stated.

2. ACCOUNTING POLICIES

The principal accounting policies adopted are as follows:

i) Basis of preparation

The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the United Kingdom and the Republic of Ireland (FRS 102) (Charities SORP FRS 102 second edition – effective January 2019) and the Charities Act 2011. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy or note.

The Polycystic Kidney Disease Charity meets the definition of a public entity under FRS102. Assets and liabilities are initially recorded at historical cost or transaction value unless otherwise stated in the relevant accounting policy.

ii) Going Concern

The Trustees are of the view that the Charity holds sufficient funds to carry on for the next 12 to 18 months and that on this basis the assessment of the Trustees is that the Charity is a going concern.

iii) Incoming Resources

All incoming resources are recognised once the Charity has entitlement to the resources, it is certain that the resources will be received, any performance conditions attached to the item(s) of income have been met or are fully within the control of the Charity and the monetary value of incoming resources can be measured reliably.

iv) Investment Income

Investment income is accounted for in the period in which the Charity is entitled to receipt. Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the Charity; this is normally upon notification of the interest paid or payable by the Bank.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Page 27/39

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025

v) Resources Expended

Expenditure is recognised once there is a legal or constructive obligation to make a payment to a third party, it is probable that settlement will be required, and the amount of the obligation can be measured reliably. All expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all costs related to the category.

Governance costs principally comprise Trustees’ meeting costs, accountancy costs, professional fees, and an allocation of staff time.

vi) Grants

Provision is made for grants when the Trustees have made a binding commitment, and this has been communicated to the applicant.

vii) Government grants

grants are accounted under the accruals model as permitted by FRS102. Grants relating to expenditure on tangible fixed assets are credited to the Statement of Financial Activities at the same rate as depreciation on the assets to which the grant relates. The deferred element of grants is included in creditors as deferred income.

viii) Tangible fixed assets and depreciation

Depreciation is provided at rates calculated to write off the cost less the estimated residual value of each tangible fixed asset over its expected useful life.

ix) Current asset investments

Current asset investments represent cash investments maturing within one year and are shown at carrying value.

x) Debtors

Trade and other debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued at the amount prepaid after taking account of any trade discounts due.

xi) Pensions

Employees of the Charity are entitled to join The Peoples Pension, a defined contribution pension scheme. The Charity contribution is restricted to the contributions disclosed in note 9. Pension costs are allocated to activities in proportion to the related staffing costs incurred. The defined contribution pension scheme is managed by The Peoples Pension Trustee. The Charity has no liability beyond making its contributions and paying across the deductions for the employee’s contributions.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Page 28/39

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

NOTES TO THE FINANCIAL STATEMENTS FOR

THE YEAR ENDED 31 MARCH 2025

xii) Creditors and provisions

Creditors and provisions are recognised where the Charity has a present obligation resulting from a past event that will probably result in the transfer of funds to a third party and the amount due to settle the obligation can be measured or estimated reliably. Creditors and provisions are normally recognised at their settlement amount after allowing for any trade discounts due.

xiii) Financial instruments

The Company only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value with the exception of bank loans which are subsequently measured at amortised cost using the effective interest method.

xiv) Funds Structure

Funds are established to provide financial resources for aspects of the Charity’s activities. Some funds were set up when the Charity received grants and donations that were made for specified purposes. Where conditions were made, the funds set up are restricted funds. The names of most of the funds convey the purposes for which they were established.

xv) Fund Accounting

General funds are unrestricted funds which are available for use at the discretion of the Trustees in furtherance of the general objectives of the Charity and which have not been designated for other purposes.

Designated funds comprise unrestricted funds that have been set aside by the Trustees for particular purposes. The aim and use of each designated fund is set out in the notes to the financial statements.

Restricted funds are funds which are to be used in accordance with specific restrictions imposed by donors, or which have been raised by the Charity for particular purposes. The costs of raising and administering such funds are charged against the specific fund. The aim and use of each restricted fund is set out in the notes to the financial statements.

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Page 29/39

Polycystic Kidney Disease Charity

Annual Report and Financial Statement for the year ended 31 March 2025

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025

3. DONATIONS, GRANTS AND LEGACIES
Restricted
funds
2025
£
Donations and gifts
-
Trusts, foundations and grants
41,655
Gift Aid
-
Total 2025
41,655
Total 2024
51,935
4. INCOME FROM CHARITABLE ACTIVITIES
Restricted
funds
2025
£
Patient research
-
Total 2025
-
Total 2024
-
5. INCOME FROM OTHER TRADING ACTIVITIES
Restricted
funds
2025
£
Shop and other income
-
Total 2025
-
Total 2024
-		 Unrestricted
funds
2025
£
268,161
-
23,046
291,207
394,055
Unrestricted
funds
2025
£
-
-
-
Unrestricted
funds
2025
£
6,388
6,388
5,559		 Total Funds
2025
£
289,243
60,738
23,046
375,027
445,990
Total Funds
2025
£
-
-
-
Total Funds
2025
£
6,388
6,388
5,559		 Total Funds
2024
£
368,890
50,986
26,114
445,990
Total Funds
2024
£
-
Total Funds
2024
£
5,559
5,559

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Page 30/39

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

NOTES TO THE FINANCIAL STATEMENTS FOR

THE YEAR ENDED 31 MARCH 2025

6. INVESTMENT INCOME
Interest income
Total 2025
Total 2024
7. EXPENDITURE ON RAISING FUNDS
Cost of fundraising
Cost of goods sold
Total 2025
Total 2024		 Restricted
funds
2025
£
-
-
-
Restricted
funds
2025
£
-
-
-
-		 Unrestricted
funds
2025
£
8,587
8,587
2,265
Unrestricted
funds
2025
£
97,996
4,266
102,262
83,508		 Total Funds
2025
£
8,587
8,587
2,265
Total Funds
2025
£
97,996
4,266
102,262
83,508		 Total Funds
2024
£
2,265
2,265
Total Funds
2024
£
78,446
5,062
83,508

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Page 31/39

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025

8. ANALYSIS OF RESEARCH AND GRANTS

Bio Resource Bank
ADPKD Research
PKD Consortium
Kidney Research UK
Staff, subcontractor and other costs
Newcastle University
University of Edinburgh
Total:
Bio Resource Bank
ADPKD Research
Kidney Research UK
Newcastle University
University of Edinburgh
Total:		 2025
£
10,000
-
10,174
-
20,475
-
-
40,649
Grants to
Institutions
No.
1
-
-
-
-
1		 2024
£
10,000
20,000
-
-
14,278
14,684
8,250
67,212
Grants to
Institutions
No.
1
2
-
1
1
5

Details of material grants are disclosed in the Trustees Report.

9. GOVERNANCE COSTS

Trustee meetings and governance
Accountancy and audit
Other professional fees
Staffing costs
Total:		 2025
£
885
13,762
7,274
30,223
52,145		 2024
£
410
15,298
3,362
12,622
31,692

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Page 32/39

Polycystic Kidney Disease Charity

Annual Report and Financial Statement for the year ended 31 March 2025

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025

10. EMPLOYMENT COSTS

Wages and salaries
Social security costs
Defined contribution pension costs
Total:		 2025
£
191,697
13,578
3,521
208,796		 2024
£
141,612
8,859
3,300
153,771

Employment costs are allocated to the activities to which they relate in the Statement of Financial Activities.

As at 31 March 2025, no pension contributions were owed by the Charity (2024: £Nil).

The average number of staff employed by the Charity during the year was 6 (2024: 6), with a full time equivalent of 4 (2024: 4).

No employee received total benefits exceeding £60,000.

Key management personnel of the Charity comprises the Trustees and the Chief Executive Officer, the Support Services Manager, the Fundraising Manager and the Community Engagement Manager. Key management personnel received total remuneration of £195,219 (2024: £144,912).

11. NET INCOME/(EXPENDITURE) FOR THE YEAR

This is stated after charging:
Independent Examiners Remuneration
Depreciation
Total:		 2025
£
-
374
374		 2024
£
-
1,968
1,968

12. TRUSTEE REMUNERATION & EXPENSES

The Trustees were not remunerated by the Charity for their services during the year. Total expenses reimbursed during the year totalled £167 (2024: £89), payable to 1 Trustee (2024: 1).

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Page 33/39

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025

13. TAXATION

The Charity is exempt from tax on income and gains falling within section 505 of the Taxes Act 1988 or s256 of the Taxation of Chargeable Gains Act 1992 to the extent that these are applied to its charitable objects. No tax charges have arisen in the Charity.

14. TANGIBLE FIXED ASSETS

Cost
At 1 April 2024
Additions
Disposals
At 31 March 2025
Accumulated depreciation
At 1 April 2024
Charge for the year
Disposals
At 31 March 2025
Net Book Value
At 1 April 2024
At 31 March 2025
5. DEBTORS
Prepayments
Accrued income
Other debtors
Total debtors		 2025
£
21,729
2,268
1,046
25,043		 2025
£
Office equipment
29,209
2,353
-
31,562
29,209
374
-
29,583
-
1,979
2024
£
21,087
-
1,055
22,142

15. DEBTORS

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

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Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025

16. LIABILITIES: AMOUNTS FALLING DUE WITHIN ONE YEAR

Trade creditors
Accruals and deferred income
Other creditors
Grant commitments (Note 20)
Total current liabilities		 2025
£
5,899
46,512
1,818
80,583
134,812		 2024
£
14,781
18,626
555
152,026
185,988

17. LIABILITIES: AMOUNTS FALLING DUE AFTER MORE THAN ONE YEAR

Grant commitments within five years (Note 20) 2025
£
-		 2024
£
14,684

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

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Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025

18. FUNDS AND RESERVES – CURRENT YEAR

Unrestricted Funds
Research
National Lottery – Matched
Funding
General fund
Total funds		 Total funds
at 01/04/24
90,000
77,285
203,243
370,533		 Income
275
-
305,907
306,182		 Expenditure
(12,877)
-
(281,545)
(294,422)		 Transfer
(77,398)
(77,285)
73,936
(80,747)		 Total funds at
31/03/25
-
-
301,546
301,546

National Lottery – Matched Funding – Designated to fund a programme of support services for people affected by polycystic kidney disease.

General fund – the free reserves, after allowing all other designated funds.

Restricted Funds
ARPKD Research
Research
National Lottery - PPP
Trusts and Foundations
Pears Grant
Ciliaren
PPIE
Total funds		 Total funds
at 01/04/24
-
50,275
-
-
-
-
-
50,275		 Income
-
-
41,655
-
-
-
-
41,655		 Expenditure
(260)
(40,649)
(41,743)
-
(25)
-
-
(82,677)		 Transfer
260
80,474
88
-
25
-
-
80,747		 Total funds at
31/03/25
-
90,000
-
-
-
-
-
90,000

Research – Research related to PKD.

ADPKD Research – Research related solely to ADPKD.

ARPKD Research – Research related solely to ARPKD.

European PKD conference – Income received to fund the European PKD conference.

National Lottery, PPP – To fund a programme of face to face, online and telephone support for patients and families who are dealing with the traumatic and often devastating effects of PKD.

National Lottery, Nurse Co-ordinator – Income received to fund Nurse co-ordination.

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Page 36/39

Polycystic Kidney Disease Charity

Annual Report and Financial Statement for the year ended 31 March 2025

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025

18. FUNDS AND RESERVES – PRIOR YEAR

Unrestricted Funds
Research
National Lottery – Matched
Funding
General fund
Total funds
Restricted Funds
ARPKD Research
Research
European PKD Conference
National Lottery - PPP
National Lottery – Nurse
Co-ordinator
PKDC/KRUK Research
Total funds		 Total funds
at 01/04/23
-
122,000
126,828
248,828
Total funds
at 01/04/23
-
50,275
-
-
-
-
50,275		 Income
-
-
401,880
401,880
Income
-
300
49,986
1,000
649
-
51,935		 Expenditure
-
-
(219,353)
(219,353)
Expenditure
-
(300)
(110,771)
(1,000)
(649)
(36)
(112,756)		 Transfer
90,000
(44,715)
(106,106)
(60,821)
Transfer
-
-
60,785
-
-
36
60,821		 Total funds at
31/03/24
90,000
77,285
203,249
370,534
Total funds at
31/03/24
-
50,275
-
-
-
-
50,275

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

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Polycystic Kidney Disease Charity

Annual Report and Financial Statement for the year ended 31 March 2025

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025

19. ANALYSIS OF NET ASSETS BETWEEN FUNDS – CURRENT YEAR

Unrestricted
Restricted		 Total
funds funds funds
2025 2025 2025
£ £
Tangible fixed assets 1,979
-		 1,979
Current assets 353,796
170,583		 524,379
Creditors due within one year (54,229)
(80,583)		 (134,812)
Creditors due in more than one year -
-		 -
Total: 301,546
90,000		 433,711
ANALYSIS OF NET ASSETS BETWEEN FUNDS – PRIOR YEAR
Unrestricted
Restricted		 Total
funds funds funds
2024 2024 2024
£ £
Tangible fixed assets -
-		 -
Current assets 389,159
232,322		 621,481
Creditors due within one year (18,626)
(167,362)		 (185,988)
Creditors due in more than one year -
(14,684)		 (14,684)
Total: 370,533
50,275		 420,808
20. GRANT COMMITMENTS
£
Balance at 1 April 2024 166,710
New commitments -
Cancelled commitments -
Commitments paid (86,127)
Balance at 31 March 2025 80,583

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee

Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

Page 38/39

Polycystic Kidney Disease Charity Annual Report and Financial Statement for the year ended 31 March 2025

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 MARCH 2025

21. RELATED PARTY TRANSACTIONS

1. RELATED PARTY TRANSACTIONS
2025 2024
Donations Received from Trustees 724 624 1 Trustees (2024: 1) made donations
during the year
Grants to related parties - -

Polycystic Kidney Disease Charity |Registered charity in England and Wales (1160970) | Registered charity in Scotland (SC047730) | A company limited by guarantee Registered company in England and Wales (9486245) |Registered address: 86-90 Paul Street, London, EC24 4NE

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