Docusign Envelope ID: 58B2E84F-AE13-41C0-9279-9CF2BFC2F1E1
REGISTERED COMPANY NUMBER: 04814120 (England and Wales) REGISTERED CHARITY NUMBER: 1101052
REPORT OF THE TRUSTEES AND UNAUDITED FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2025
FOR
THE ALKAPTONURIA SOCIETY LTD
Archangel Accounting Burnham House Splash Lane Wyton Huntingdon PE28 7AF
Docusign Envelope ID: 58B2E84F-AE13-41C0-9279-9CF2BFC2F1E1
THE ALKAPTONURIA SOCIETY LTD
CONTENTS OF THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2025
| Page | |
|---|---|
| Report of the Trustees | 1 to 6 |
| Independent Examiner's Report | 7 |
| Statement of Financial Activities | 8 |
| Balance Sheet | 9 to 10 |
| Notes to the Financial Statements | 11 to 23 |
Docusign Envelope ID: 58B2E84F-AE13-41C0-9279-9CF2BFC2F1E1
THE ALKAPTONURIA SOCIETY LTD
REPORT OF THE TRUSTEES FOR THE YEAR ENDED 30 JUNE 2025
The trustees who are also directors of the charity for the purposes of the Companies Act 2006, present their report with the financial statements of the charity for the year ended 30 June 2025. The trustees have adopted the provisions of 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).
OBJECTIVES AND ACTIVITIES Objectives and aims
Transforming the lives of AKU patients through patient support, community building and medical research.
- Patient Support Through up-to-date and reliable information, annual UK patient workshops, biennial international workshops, hands-on support at the National Alkaptonuria Centre (NAC), individual home visits, and mental health support.
Living with AKU is challenging, with loss of mobility and pain affecting patients' physical and mental health. This is why the support we provide to our patients and their families is vital. We help them come to terms with their diagnosis and provide them with the tools to best manage their condition. 2. Community Building Uniting patients in the UK and abroad and helping to raise awareness of the disease among the public and medical professionals.
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Living with AKU is isolating. Patients are sparsely located all over the world, often without access to care and doctors who know about their condition. We work hard to unite AKU patients and build a supportive community.
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- Medical Research To understand, treat, and cure AKU. Our ultimate goal is finding a cure for AKU. We now have access to a disease modifying treatment after our successful clinical trial, DevelopAKUre, that showed a drug called nitisinone reduced the acid that causes AKU by 99.8%. We are now championing research into other therapies and co-therapies to realise our goal of curing AKU.
About Alkaptonuria & the AKU Society
AKU, also known as 'Black Bone Disease', is an extremely rare genetic condition, which causes significant damage to the bones, cartilage, and tissues. AKU usually affects one in every 250,000 people worldwide. It is a recessive condition that is caused by a mutation of one chromosome; this means that if two people carry the fault gene, their child has a 25% chance of developing AKU.
AKU stops patients' bodies from breaking down a chemical called homogentisic acid (HGA), which the body naturally produces during the digestion of food. Due to this, HGA builds up in the body and, over time, leads to black and brittle bones and cartilage, and early-onset osteoarthritis. The build-up of HGA in the body can also lead to other, sometimes more severe health complications.
Founded in 2003, the AKU Society offers life-changing support to patients and their families. It provides patients with personalised care and home visits, along with the latest information from specialist workshops, our website, social media, and online patient communities.
The AKU Society also pioneers ground-breaking research into the disease, including our successful European-wide clinical trial, DevelopAKUre, into a drug called nitisinone. This showed the drug was safe and effective in treating AKU and the drug received approval for treating AKU from the European Medicine Agency in 2020.
We see a future where no one born with AKU anywhere in the world has the symptoms of this disease. Through patient support, community building, and medical research, the AKU Society aims to transform the lives of AKU patients.
AKU patients, like the majority of rare disease patients, often feel isolated because of their disease. Many patients have had years of misdiagnosis and misunderstanding from medical professionals. Often, their family finds it hard to understand what is wrong. This leaves many AKU patients feeling depressed and with a sense of isolation.
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Docusign Envelope ID: 58B2E84F-AE13-41C0-9279-9CF2BFC2F1E1
THE ALKAPTONURIA SOCIETY LTD
REPORT OF THE TRUSTEES FOR THE YEAR ENDED 30 JUNE 2025
The AKU Society aims to change this by uniting patients at our biennial international and annual domestic patient workshops which helps us to grow the AKU community. We have also formed an innovative partnership with rare disease counselling service Rareminds CIC which is designed to address the often-neglected mental health of those suffering with AKU. This service allows us to bring people together to learn and share ways they can manage their mental health through techniques such as mindfulness and individual one-on-one counselling.
Our social media channels and website inform the public and medical professionals about our work and the advances in research into the disease. Our website also offers information in different languages and formats to make it accessible to those who either live abroad or in the UK with English as a second language, have specific learning difficulties, or with sensory issues.
We are also members of the Patient Information Forum (PIF) 'PIF Tick' programme. This kitemark shows that all medical information has gone through a strict production procedure designed to make it as accessible as possible including peer and user reviews.
The most useful way we can help our patients is through active research into the understanding and treatment of AKU. Our goal is to find a cure for the disease. We continue to build strong partnerships with universities and hospitals to expand the scientific knowledge of AKU and its treatment.
Achievements and performance during the period
1. National Alkaptonuria Centre (NAC)
The NHS National AKU Centre (NAC), based at the Royal Liverpool University Hospital and funded by NHS England Highly Specialised Services, continues to deliver world-class care to AKU patients. It offers annual multidisciplinary check-ups, monitoring, and access to nitisinone. The AKU Society (AKUS) plays an integral role by supporting patients before, during, and after their NAC visits. We ensure continuity of care, facilitate feedback, and advocate for patient needs.
Patient evaluation feedback highlighted that 88.9% of NAC patients rated their visit 5/5, with the remainder giving 4/5. Recurring feedback focused on a desire for a dedicated patient space during visits and the reinstatement of ENT and rheumatology appointments.
2. Medical research
AKUS continues to support pioneering medical research in partnership with the University of Liverpool and other international institutions.
• mRNA Therapy: Our exploratory mRNA therapy programme aims to correct the underlying genetic defect in AKU. Initial experiments with mRNA delivery systems show promising results in AKU mice, with further development underway.
• Tyrosine Reduction Co-Therapy: To improve the safety of nitisinone, AKUS funds cutting-edge work on SLC6A19 inhibitors to reduce plasma tyrosine. Preclinical results from compounds in mice demonstrated significant and sustained tyrosine reductions, with potential to transform treatment, particularly for children.
• New Scientific Findings: Research led by Prof. Ranganath identified a 20-fold higher prevalence of Parkinson’s disease among AKU patients, prompting new investigations into neurodegeneration and oxidative stress in AKU.
• PhD Studentships: AKUS funds two PhDs investigating cartilage pigmentation and oxidative stress, ensuring sustained research capacity.
AKU Patient Workshop
In November 2024, we hosted a major international patient workshop in Liverpool, attended by AKU patients from 19 countries. Sessions focused on diet, exercise, and mental health, in collaboration with the NAC team. 70.8% of attendees reported a significant increase in knowledge and confidence in managing their AKU. The event also helped build peer support and patient resilience.
4. Mental Health Support
We continued our partnership with RareMinds CIC to offer free, specialist mental health counselling to patients and families. In 2024, we also introduced new mindfulness and stress-management resources as part of our “Body to Mind” initiative. These services are crucial to helping patients navigate the emotional and social challenges of life with AKU.
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THE ALKAPTONURIA SOCIETY LTD
REPORT OF THE TRUSTEES
FOR THE YEAR ENDED 30 JUNE 2025
5. AKU Global Registry
A major milestone in 2024 was the launch of our UK and Global AKU Patient Registry. Built in collaboration with Dendrite Ltd, the registry will track health outcomes, symptom progression, and treatment efficacy. It forms the basis of our impact measurement framework and will inform future care and research strategies.
- International Scientific Conference on AKU
Instead of a scientific conference in 2024, we prioritised the global patient workshop. However, our CEO presented AKU’s work at key international rare disease forums, including the REMEDI4ALL Conference in Barcelona. Plans for the next International Scientific Conference are underway.
- AKU Society staff
Our Head of Patient Support and Welfare, Hannah Dwyer, joined at the end of 2024 and has provided a high level of support, including attending NAC and offering telephone/email support throughout the year. She has also introduced a new online patient feedback system, ran a focus group for in-depth insights, and facilitated the launch of a UK WhatsApp peer support group to further community connection. Hannah plans to reintroduce home visits and encourage more localised support through facilitating face-to-face patient meetings.
AKUS has recruited Georga Chiton in the role of Communications Officer. Georga will play a vital role in shaping the voice of the AKU Society, raising awareness about AKU, and engaging with our diverse community of patients, families, researchers, and partners. The role will collaborate closely with Hannah Dwyer to deliver impactful communications across digital, social, and print platforms. Since being in post, Georga has spearheaded our first Self-care 4 rare campaign, to raise awareness of the importance of looking after both physical and mental health whilst having a rare disease. Alongside Georga, Hannah plans to offer a variety of virtual support sessions throughout the year, focusing on targeted awareness days, weeks and months.
OBJECTIVES AND ACTIVITIES
Public benefit
The Trustees have complied with Section 17(5) of the Charities Act 2011 and have considered the Charity Commission's guidance on public benefit. See “About Alkaptonuria” for details of how the charity meets its public benefit requirement.
Partnerships
We maintain close partnerships with:
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University of Liverpool: Home to AKU research and multiple AKUS-funded PhD and postdoctoral projects.
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Royal Liverpool University Hospital: Host of the NAC.
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Other collaborators: Sanofi, Vrije Universiteit Brussels, University of Alabama, and others.
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These partnerships are essential for advancing treatment, research, and patient care.
Grantmaking
Our research funding is targeted to maximise impact. We focus primarily on the University of Liverpool, where we have a 17-year track record of high-impact collaboration. Grants are awarded based on peer-reviewed proposals and support long-term therapeutic development.
Volunteers
Our dedicated volunteers, mainly from the AKU patient and family community, play an important role in fundraising, patient support, and awareness-raising activities.
Corporate Partnerships
We maintain a long-standing partnership with Vitaflo, which provides low-protein dietary products and financial contributions toward our work.
FINANCIAL REVIEW
Financial position
We are currently holding significant reserves due to the large-scale scientific research that we conduct. The scale of these projects means that the fundraising for these studies takes place over multiple years. Due to this we must hold funding until the threshold of funding to begin the studies is met and then draw down on it each year for multi-year studies. The money we raise for these studies in our reserves are placed into restricted or designated funds relating to the specific project.
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Docusign Envelope ID: 58B2E84F-AE13-41C0-9279-9CF2BFC2F1E1
THE ALKAPTONURIA SOCIETY LTD
REPORT OF THE TRUSTEES
FOR THE YEAR ENDED 30 JUNE 2025
FINANCIAL REVIEW
Principal funding sources
The charity's principal funding sources is a grant for the National AKU Centre from the Royal Liverpool University Hospital.
Investment policy and objectives
The Trustees have the power to invest any monies not immediately required for charitable purposes of the Company. The policy involves investing in ethical bonds.
Reserves policy
At any time, the Charity is to keep enough reserves to enable it to meet its contractual obligations for up to 12 months. Any excess reserves will be used to increase work to meet our charitable objectives.
Incoming resources for the year totalled £367,726 (2024: £319,392) of which £322,524 (2024: £222,774) related to funding for projects upon which restrictions are placed. Total expenditure for the period was £294,929 (2024: £307,370).
At 30 June 2025 the Charity's total funds stood at £1,027,979 (2024: £955,182) of which £675,591 (2024: £628,313) represented restricted funds. Details of each restricted fund are shown in the notes to the accounts.
The Trustees have designated £112,500 (2024: £112,500) for use towards research costs over and above the £150,000 (2024: £150,000) of restricted research funds.
There is also a designated fund representing the net book value of fixed assets that can only be realised by disposing of tangible fixed assets.
FUTURE PLANS
We are continuing to fundraise for a tyrosine reduction study to counter the side effects of nitisinone treatment.
We are also in the process of fundraising for a number of other research projects and patient support projects. These include an international AKU patient workshop, outreach campaigns, and mental health support.
STRUCTURE, GOVERNANCE AND MANAGEMENT Governing document
The Alkaptonuria Society is a charitable company limited by guarantee governed by its Memorandum and Articles of Association dated 27th June 2003. It registered as a charity with the Charity Commission on 5th December 2003.
Recruitment and appointment of new trustees
As set out in the Articles of Association, at every Annual General Meeting one third of the Trustees shall be subject to retirement by rotation. Those who have been longest in office since their last appointment will be subject to this requirement. If the vacancy left by the retiring Trustee is not filled at the meeting, if willing to continue, the retiring Trustee will be reappointed.
Organisational structure
The AKU Society has a board of trustees and three staff (part-time CEO, full-time Head of Patient Support and Welfare, and full-time Fundraising and Communications Officer).
Decision making
Strategic and non-executive decisions are made by the board of trustees, which meets on a quarterly basis. Day-to-day and operational decisions are made by staff.
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THE ALKAPTONURIA SOCIETY LTD
REPORT OF THE TRUSTEES
FOR THE YEAR ENDED 30 JUNE 2025
STRUCTURE, GOVERNANCE AND MANAGEMENT
Induction and training of new trustees
All Trustees receive a full induction and training day, in accordance with Charity Commission good practice. They are briefed on their legal obligations under charity and company law, the specific structure of Alkaptonuria Society as a Company Limited by Guarantee, including the committee and decision-making process and business plan. During this training day they will meet key employees and co-trustees
Key management remuneration
The CEO is paid £54,565 per year. Pay and remuneration for staff is decided by the board of trustees and is reviewed on a regular basis and compared with similar positions in other similar sized charities.
Wider network
The AKU Society is a member of the Genetic Alliance UK, which brings together rare disease patient groups in the UK, and the Strategic Healthcare Alliance, which campaigns for fair policy for rare diseases. It is also a member of Eurordis (the European Organisation of Rare Diseases).
Related parties
The AKU Society works with the networks mentioned above to help share information about rare diseases, support rare disease patients, and ensure that policies for rare disease patients are equitable and fair.
REFERENCE AND ADMINISTRATIVE DETAILS Registered Company number
04814120 (England and Wales)
Registered Charity number
1101052
Registered office
66 Devonshire Road CAMBRIDGE Cambridgeshire CB1 2BL
Trustees
Prof L R Ranganath Doctor Prof A Shenkin Emeritus Professor Dr N T Sireau PhD Charity CEO W A Esmond Retired Dr D Batty Prof J A Gallagher Ms J Barnes
Independent Examiner
Julia Jones FCA Archangel Accounting Burnham House Splash Lane Wyton Huntingdon PE28 7AF
Solicitors
White & Case LLP 5 Old Broad Street London EC2N 1DW
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Docusign Envelope ID: 58B2E84F-AE13-41C0-9279-9CF2BFC2F1E1
THE ALKAPTONURIA SOCIETY LTD
REPORT OF THE TRUSTEES
FOR THE YEAR ENDED 30 JUNE 2025
REFERENCE AND ADMINISTRATIVE DETAILS
Bankers
Co-operative Bank plc PO Box 250 Delf House SKELMERSDALE WN8 6WT
Unity Trust Bank Nine Brindley Place BIRMINGHAM B1 2HB
This report has been prepared in accordance with the special provisions of Part 15 of the Companies Act 2006 relating to small companies.
13/10/2025
Approved by order of the board of trustees on ............................................ and signed on its behalf by:
........................................................................ 251710C999F34B7... Dr N T Sireau PhD - Trustee
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INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF
THE ALKAPTONURIA SOCIETY LTD
Independent examiner's report to the trustees of The Alkaptonuria Society Ltd ('the Company')
I report to the charity trustees on my examination of the accounts of the Company for the year ended 30 June 2025.
Responsibilities and basis of report
As the charity's trustees of the Company (and also its directors for the purposes of company law) you are responsible for the preparation of the accounts in accordance with the requirements of the Companies Act 2006 ('the 2006 Act').
Having satisfied myself that the accounts of the Company are not required to be audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my examination of your charity's accounts as carried out under Section 145 of the Charities Act 2011 ('the 2011 Act'). In carrying out my examination I have followed the Directions given by the Charity Commission under Section 145(5) (b) of the 2011 Act.
Independent examiner's statement
Since your charity's gross income exceeded £250,000 your examiner must be a member of a listed body. I can confirm that I am qualified to undertake the examination because I am a member of the Institute of Chartered Accountants in England and Wales (ICAEW), which is one of the listed bodies.
I have completed my examination. I confirm that no matters have come to my attention in connection with the examination giving me cause to believe:
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accounting records were not kept in respect of the Company as required by Section 386 of the 2006 Act; or 2. the accounts do not accord with those records; or
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the accounts do not comply with the accounting requirements of Section 396 of the 2006 Act other than any requirement that the accounts give a true and fair view which is not a matter considered as part of an independent examination; or
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the accounts have not been prepared in accordance with the methods and principles of the Statement of Recommended Practice for accounting and reporting by charities (applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102)).
I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.
Julia Jones FCA
Archangel Accounting Burnham House Splash Lane Wyton Huntingdon PE28 7AF
15/10/2025
Date: .............................................
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THE ALKAPTONURIA SOCIETY LTD
STATEMENT OF FINANCIAL ACTIVITIES (INCORPORATING AN INCOME AND EXPENDITURE ACCOUNT) FOR THE YEAR ENDED 30 JUNE 2025
| 2025 | 2024 | ||||
|---|---|---|---|---|---|
| Unrestricte | Restricted | Total | Total | ||
| d funds | funds | funds | funds | ||
| £ | £ | £ | £ | ||
| Notes | |||||
| INCOME AND ENDOWMENTS | |||||
| FROM | |||||
| Donations and legacies | 3 | 9,661 | 3,868 | 13,529 | 32,127 |
| Charitable activities | |||||
| Grants | 5 | - | 318,656 | 318,656 | 266,847 |
| Investment income | 4 | 35,541 | - | 35,541 | 18,506 |
| Other income | 6 | - | - | - | 1,912 |
| Total | 45,202 | 322,524 | 367,726 | 319,392 | |
| EXPENDITURE ON | |||||
| Raising funds | 7 | - | 13,774 | 13,774 | 9,241 |
| Charitable activities | |||||
| Charitable activities including research | 8 | 19,683 | 261,472 | 281,155 | 298,129 |
| Total | 19,683 | 275,246 | 294,929 | 307,370 | |
| NET INCOME | 25,519 | 47,278 | 72,797 | 12,022 | |
| Transfers between funds | 17 | - | - | - | - |
| Net movement in funds | 25,519 | 47,278 | 72,797 | 12,022 | |
| RECONCILIATION OF FUNDS | |||||
| Total funds brought forward | 326,869 | 628,313 | 955,182 | 943,160 | |
| TOTAL FUNDS CARRIED FORWARD |
352,388 | 675,591 | 1,027,979 | 955,182 |
The notes form part of these financial statements
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Docusign Envelope ID: 58B2E84F-AE13-41C0-9279-9CF2BFC2F1E1
THE ALKAPTONURIA SOCIETY LTD (REGISTERED NUMBER: 04814120)
BALANCE SHEET
30 JUNE 2025
| Notes FIXED ASSETS Tangible assets 14 CURRENT ASSETS Debtors 15 Cash at bank CREDITORS Amounts falling due within one year 16 NET CURRENT ASSETS TOTAL ASSETS LESS CURRENT LIABILITIES NET ASSETS FUNDS 17 Unrestricted funds Restricted funds TOTAL FUNDS |
2025 Total funds £ 4,279 30,741 994,928 1,025,669 (1,969) 1,023,700 1,027,979 1,027,979 352,388 675,591 1,027,979 |
2024 Total funds £ 2,270 11,496 1,050,038 |
|---|---|---|
| 1,061,534 (108,622) |
||
| 952,912 | ||
| 955,182 | ||
| 955,182 | ||
| 326,869 628,313 |
||
| 955,182 |
The charitable company is entitled to exemption from audit under Section 477 of the Companies Act 2006 for the year ended 30 June 2025.
The members have not required the company to obtain an audit of its financial statements for the year ended 30 June 2025 in accordance with Section 476 of the Companies Act 2006.
The trustees acknowledge their responsibilities for
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(a) ensuring that the charitable company keeps accounting records that comply with Sections 386 and 387 of the Companies Act 2006 and
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(b) preparing financial statements which give a true and fair view of the state of affairs of the charitable company as at the end of each financial year and of its surplus or deficit for each financial year in accordance with the requirements of Sections 394 and 395 and which otherwise comply with the requirements of the Companies Act 2006 relating to financial statements, so far as applicable to the charitable company.
The notes form part of these financial statements
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Docusign Envelope ID: 58B2E84F-AE13-41C0-9279-9CF2BFC2F1E1
THE ALKAPTONURIA SOCIETY LTD (REGISTERED NUMBER: 04814120)
BALANCE SHEET - continued 30 JUNE 2025
These financial statements have been prepared in accordance with the provisions applicable to charitable companies subject to the small companies regime.
The financial statements were approved by the Board of Trustees and authorised for issue on . ..........................................and were signed on its behalf by: 13/10/2025
............................................. 251710C999F34B7... N T Sireau PhD - Trustee
The notes form part of these financial statements
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Docusign Envelope ID: 58B2E84F-AE13-41C0-9279-9CF2BFC2F1E1
THE ALKAPTONURIA SOCIETY LTD
NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 30 JUNE 2025
1. LEGAL FORM
The charity is a registered charity registered in England and Wales number 1101052 and a company limited by guarantee, having no share capital, incorporated in England and Wales number 04814120.
Its registered office and principal place of business is 66 Devonshire Road, Cambridge, CB1 2BL.
The operations of the entity are to educate the public regarding Alkaptonuria Disease through an internet website; provide information and advice to sufferers via a National AKU Centre, hosting conferences and through online community projects; and to promote research into Alkaptonuria Disease by working with research teams in the Universities in Liverpool.
2. ACCOUNTING POLICIES
Basis of preparing the financial statements
The financial statements of the charitable company, which is a public benefit entity under FRS 102, have been prepared in accordance with the Charities SORP (FRS 102) '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)', Financial Reporting Standard 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland' and the Companies Act 2006. The financial statements have been prepared under the historical cost convention.
The trustees consider there to be no material uncertainties about the charity's ability to continue as a going concern.
The charity is a public benefit entity.
Financial reporting standard 102 - reduced disclosure exemptions
The charitable company has taken advantage of the following disclosure exemptions in preparing these financial statements, as permitted by FRS 102 'The Financial Reporting Standard applicable in the UK and Republic of Ireland':
- the requirements of Section 7 Statement of Cash Flows.
Income
All income is recognised in the Statement of Financial Activities once the charity has entitlement to the funds, it is probable that the income will be received and the amount can be measured reliably.
Donations are recognised on receipt.
Grant income is recognised in full on receipt unless there are unfulfilled performance conditions that do not allow the income to be recognised. In this case the grant is accounted for as a liability until the performance conditions have been met.
Grant income is only deferred if the grant is time-related and relates partly or wholly to a post year-end time period.
The charity becomes entitled to the EC grant income once eligible expenditure is made, so income is accrued where expenditure has been incurred.
The charity is not VAT registered.
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THE ALKAPTONURIA SOCIETY LTD
NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2025
2. ACCOUNTING POLICIES - continued
Expenditure
Liabilities are recognised as expenditure as soon as there is a legal or constructive obligation committing the charity to that expenditure, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all cost related to the category. Where costs cannot be directly attributed to particular headings they have been allocated to activities on a basis consistent with the use of resources.
Raising funds
Costs of generating funds comprise costs incurred in order to encourage others to donate to the charity and the costs associated with preparing bids and tenders for grant funding.
Charitable activities
Charitable expenditure comprises those costs incurred by the charity in the delivery of its activities and services for its beneficiaries. It includes both costs that can be allocated directly to such activities and those costs of an indirect nature necessary to support them.
Governance costs
Governance costs include those costs associated with meeting the constitutional and statutory requirements of the charity and include the examination fees and costs linked to the strategic management of the charity.
Allocation and apportionment of costs
All costs are allocated between the expenditure categories of the SOFA on a basis designed to reflect the use of the resource. Costs relating to a particular activity are allocated directly, others are apportioned on an appropriate basis, e.g. estimated usage.
Tangible fixed assets
Depreciation is provided at the following annual rates in order to write off each asset over its estimated useful life.
Plant and machinery - 33% on cost and 25% on reducing balance
All assets costing more than £500 are capitalised.
Taxation
The charity is exempt from corporation tax on its charitable activities. Irrecoverable VAT is included in the cost of the expense to which it relates.
Fund accounting
Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the trustees.
Restricted funds can only be used for particular restricted purposes within the objects of the charity. Restrictions arise when specified by the donor or when funds are raised for particular restricted purposes.
Further explanation of the nature and purpose of each fund is included in the notes to the financial statements.
Research and development
Expenditure on research and development is written off in the year in which it is incurred.
Pension costs and other post-retirement benefits
The charitable company operates a defined contribution pension scheme. Contributions payable to the charitable company's pension scheme are charged to the Statement of Financial Activities in the period to which they relate.
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THE ALKAPTONURIA SOCIETY LTD
NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2025
2. ACCOUNTING POLICIES - continued
Debtors
Trade and other debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due.
Cash at bank and in hand
Cash at bank and cash in hand includes cash and short term highly liquid investments with a short maturity of three months or less from the date of acquisition or opening the deposit or similar account.
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 estimated or measured reliably Creditors and provisions are normally recognised at their settlement amount after allowing for any trade discounts due.
Financial instruments
The charity only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised as transaction value and subsequently measured at their settlement value.
3. DONATIONS AND LEGACIES
| Donations 4. INVESTMENT INCOME Deposit account interest |
2025 £ 13,529 2025 £ 35,541 |
2024 £ 32,127 |
|---|---|---|
| 2024 £ 18,506 |
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THE ALKAPTONURIA SOCIETY LTD
NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2025
5. INCOME FROM CHARITABLE ACTIVITIES
| Grants Activity Research Grants received, included in the above, are as follows: National AKU Centre The Hobson Charity Woodroffe Benton – 2024 Patient Workshop contribution Vitaflo UKRI MRC National Lottery Community Fund Robert Luff Foundation W G Edwards Charitable Fondation Candex Solutions Netherlands B.V 6. OTHER INCOME Other income 7. RAISING FUNDS Raising donations and legacies Costs of generating income Other trading activities Bad debts |
2025 318,656 2025 £ 291,356 - - - - - 20,000 2,300 5,000 318,656 2025 £ - 2025 £ 13,774 2025 £ - |
2024 266,847 |
|---|---|---|
| 2024 £ 180,544 4,575 1,750 5,000 54,978 20,000 - - - |
||
| 266,847 | ||
| 2024 £ 1,912 |
||
| 2024 £ 9,241 |
||
| 2024 £ - |
14
Docusign Envelope ID: 58B2E84F-AE13-41C0-9279-9CF2BFC2F1E1
THE ALKAPTONURIA SOCIETY LTD
NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2025
8. CHARITABLE ACTIVITIES COSTS
| Support | |||
|---|---|---|---|
| Direct | costs (see | ||
| Costs | note 9) | Totals | |
| £ | £ | £ | |
| Research | 231,422 | 49,733 | 281,155 |
9. SUPPORT COSTS
| Governance | |
|---|---|
| costs | |
| £ | |
| Research | 49,733 |
10. NET INCOME/(EXPENDITURE)
Net income/(expenditure) is stated after charging/(crediting):
| 2025 | 2024 | |
|---|---|---|
| £ | £ | |
| Depreciation - owned assets | 1,523 | 1,135 |
11. TRUSTEES' REMUNERATION AND BENEFITS
Dr N Sireau, a trustee, was remunerated for his services as Chief Executive. Permission to pay this salary was received from the Charity Commission in accordance with Clause 5 of the Articles of Association.
| Trustees' salaries Trustees' social security Trustees' pension contributions |
2025 £ 54,565 5,999 2,728 63,293 |
2024 £ 53,318 3,665 2,666 |
|---|---|---|
| 59,649 |
Trustees' expenses
There were no trustees' expenses paid for the year ended 30 June 2025 nor for the year ended 30 June 2024.
15
Docusign Envelope ID: 58B2E84F-AE13-41C0-9279-9CF2BFC2F1E1
THE ALKAPTONURIA SOCIETY LTD
NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2025
12. STAFF COSTS
| Wages and salaries Social security costs Other pension costs |
2025 £ 90,444 9,842 4,522 104,808 |
2024 £ 120,237 7,516 5,840 |
|---|---|---|
| 133,593 |
The staff costs relating to Key Management Personnel were £87,031 (2024: £103,814).
The average monthly number of employees during the year was as follows:
| Chief Executive Officer Head of Patient Support and Welfare Fundraising and Communications Officer |
2025 1 1 1 3 |
2024 1 1 1 3 |
|---|---|---|
No employees received emoluments in excess of £60,000.
13. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES
| Unrestricted funds £ INCOME AND ENDOWMENTS FROM Donations and legacies 16,222 Charitable activities Grants 59,978 Investment income 18,506 Other income 1,912 Total 96,618 EXPENDITURE ON Raising funds - Charitable activities Research 1,258 Total 1,258 NET INCOME/(EXPENDITURE) 95,360 Transfers between funds 4,378 Net movement in funds 99,738 |
Restricted Total funds funds £ £ 15,905 32,127 206,869 266,847 - 18,506 - 1,912 222,774 319,392 9,241 9,241 296,871 298,129 306,112 307,370 (83,338) 12,022 (4,378) - (87,716) 12,022 |
|---|---|
16
Docusign Envelope ID: 58B2E84F-AE13-41C0-9279-9CF2BFC2F1E1
THE ALKAPTONURIA SOCIETY LTD
NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2025
13. COMPARATIVES FOR THE STATEMENT OF FINANCIAL ACTIVITIES – continued
| Unrestricted funds £ RECONCILIATION OF FUNDS Total funds brought forward 227,131 TOTAL FUNDS CARRIED FORWARD 326,869 14. TANGIBLE FIXED ASSETS COST At 1 July 2024 Additions Disposals At 30 June 2025 DEPRECIATION At 1 July 2024 Charge for year Eliminated on disposal At 30 June 2025 NET BOOK VALUE At 30 June 2025 At 30 June 2024 15. DEBTORS: AMOUNTS FALLING DUE WITHIN ONE YEAR Trade debtors Prepayments and accrued income |
Restricted funds £ Total funds £ 716,029 943,160 628,313 955,182 Plant and machinery £ 3,406 3,531 - 6,937 1,136 1,522 - 2,658 4,279 2,270 2025 2024 £ £ 3,641 - 27,100 11,496 30,741 11,496 |
Total funds £ 943,160 |
|---|---|---|
| 955,182 | ||
17
Docusign Envelope ID: 58B2E84F-AE13-41C0-9279-9CF2BFC2F1E1
THE ALKAPTONURIA SOCIETY LTD
NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2025
16. CREDITORS: AMOUNTS FALLING DUE WITHIN ONE YEAR
| Trade creditors Other creditors Accruals and deferred income Deferred income comprises: National AKU Centre Total deferred income |
Deferred Received Income b.f 2024/25 104,300 104,300 104,300 104,300 |
2025 2024 £ £ 600 920 1,369 3,402 - 104,300 1,969 108,622 Deferred Income Income c.f 2024/25 - 104,300 - 104,300 |
2025 2024 £ £ 600 920 1,369 3,402 - 104,300 1,969 108,622 Deferred Income Income c.f 2024/25 - 104,300 - 104,300 |
|---|---|---|---|
| 104,300 |
17. MOVEMENT IN FUNDS
| Unrestricted funds Combatting Tyrosinaemia in AKU General Fund Designated Fixed Asset Fund Designated Research Fund Restricted funds Childwick Trust SOBI Tyrosine Degradation Study Patient Workshop SOFIA-Paediatric Study Research Fund National AKU Centre Patient Registry Homogentisic Acid Studies Awards For All TOTAL FUNDS |
At 1/7/24 £ 54,978 155,985 3,406 112,500 326,869 58,613 4,562 279,171 45,620 47,095 150,000 14,610 11,538 17,104 - 628,313 955,182 |
Net movement in funds £ - 25,519 - - 25,519 - - (11,292) 3,768 - - 85,057 3,641 - (33,895) 47,279 72,798 |
Transfers between funds £ - - - - - - (33,895) - - - - 33,895 - - |
At 30/06/2025 £ 54,978 181,504 3,406 112,500 |
|---|---|---|---|---|
| 352,388 58,613 4,562 267,879 15,493 47,095 150,000 99,667 15,179 17,104 - |
||||
| 675,592 | ||||
| 1,027,980 |
18
Docusign Envelope ID: 58B2E84F-AE13-41C0-9279-9CF2BFC2F1E1
THE ALKAPTONURIA SOCIETY LTD
NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2025
17. MOVEMENT IN FUNDS - continued
Net movement in funds, included in the above are as follows:
| Unrestricted funds Combatting Tyrosinaemia in AKU General Fund Designated Fixed Asset Fund Designated Research Fund Restricted funds Childwick Trust SOBI Tyrosine Degradation Study Patient Workshop SOFIA-Paediatric Study Research Fund National AKU Centre Patient Registry Homogentisic Acid Studies Awards For All TOTAL FUNDS |
Incoming resources £ - 45,202 - - 45,202 - - 20,000 7,300 - - 291,356 3,868 - - 322,524 367,726 |
Resources expended £ - (19,683) - - (19,683) - - (31,292) (3,532) - - (206,300) (227) - (33,895) (275,246) (294,929) |
Movement in funds £ - 25,519 - - |
|
|---|---|---|---|---|
| 25,519 - - (11,292) 3,768 - - 85,056 3,641 - (33,895) |
||||
| 47,278 | ||||
| 72,797 |
19
Docusign Envelope ID: 58B2E84F-AE13-41C0-9279-9CF2BFC2F1E1
THE ALKAPTONURIA SOCIETY LTD
NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2025
17. MOVEMENT IN FUNDS - continued
Comparatives for movement in funds
| MOVEMENT IN FUNDS Unrestricted funds Combatting Tyrosinaemia in AKU General Fund Designated Fixed Asset Fund Designated Royalties Designated Research Fund Restricted funds Childwick Trust Breaking Down Barriers SOBI Vitaflo AKU recipe book Tyrosine Degradation Study Patient Workshop SOFIA-Paediatric Study Research Fund European Joint Programme on Rare Diseases National AKU Centre Patient Registry Homogentisic Acid Studies SOBI - Translation Project Education Outreach Programme Website Fund TOTAL FUNDS |
At 1/7/23 £ - 111,186 3,338 107 112,500 227,131 58,613 8,928 2,561 10,000 355,125 30,380 47,095 150,000 15,328 - 22,769 17,104 2,000 (4,575) 701 716,029 943,160 |
Net movement in funds £ 54,978 40,314 68 - - 95,360 - - - - (75,954) 15,240 - - (20,663) 5,682 (11,231) - - 4,575 (987) (83,338) 12,022 |
Transfers between funds £ - 4,485 - (107) - 4,378 - (8,928) 2,001 (10,000) - - - - 5,335 8,928 - - (2,000) - 286 (4,378) - |
At 30/06/2024 £ 54,978 155,985 3,406 - 112,500 |
|---|---|---|---|---|
| 326,869 58,613 - 4,562 - 279,171 45,620 47,095 150,000 - 14,610 11,538 17,104 - - - |
||||
| 628,313 | ||||
| 955,182 |
20
Docusign Envelope ID: 58B2E84F-AE13-41C0-9279-9CF2BFC2F1E1
THE ALKAPTONURIA SOCIETY LTD
NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2025
17. MOVEMENT IN FUNDS - continued
Comparative net movement in funds, included in the above are as follows:
| Unrestricted funds Combatting Tyrosinaemia in AKU General Fund Designated Fixed Asset Fund Designated Royalties Designated Research Fund Restricted funds Childwick Trust Breaking Down Barriers SOBI Vitaflo AKU recipe book Tyrosine Degradation Study Patient Workshop SOFIA-Paediatric Study Research Fund European Joint Programme on Rare Diseases National AKU Centre Patient Registry Homogentisic Acid Studies SOBI - Translation Project Education Outreach Programme Website Fund TOTAL FUNDS |
Incoming resources £ 54,978 41,640 - - - 96,618 - - - - - 30,500 - - 3,386 180,544 3,769 - - 4,575 - 222,774 319,392 |
Resources expended £ - (1,326) 68 - - (1,258) - - - - (75,954) (15,260) - - (24,049) (174,862) (15,000) - - - (987) (306,112) (307,370) |
Movement in funds £ 54,978 40,314 68 - - |
|
|---|---|---|---|---|
| 95,360 - - - - (75,954) 15,240 - - (20,663) 5,682 (11,231) - - 4,575 (987) |
||||
| (83,338) | ||||
| 12,022 |
FUND OBJECTIVES
Combatting Tyrosinaemia in AKU
This is funding we have secured from a variety of sources to research new treatments for reducing excess tyrosine caused by nitisinone therapy in AKU and thereby prevent its side effects.
General Fund
Unrestricted income and expenditure – covers the day-to-day running of the charity.
Designated Fixed Asset Fund
Fund designated to cover the remaining value of the fixed assets.
21
Docusign Envelope ID: 58B2E84F-AE13-41C0-9279-9CF2BFC2F1E1
THE ALKAPTONURIA SOCIETY LTD
NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2025
Designated Research
This comprises funds set aside by the Trustees for the research programme at the University of Liverpool.
Childwick Trust
Funding from the Childwick Trust into research to understand the evolution of AKU and document the extent of disease in under 16s, with a particular emphasis on studying the existence of ochronosis.
SOBI
Grants from Swedish Orphan Biovitrium AB, including to produce two videos aimed at educating the public, patients, policymakers and health care professionals about living with AKU and the success of the DevelopAKUre consortium.
SOBI Translation
Funding to translate and information leaflet into eight identified languages for international AKU patients.
Tyrosine Degradation Study
Funding from individual donors, Pilkington Charitable Trust and the Hamamelis Trust towards the costs of research into tyrosine degradation and inhibition.
Patient Workshop
This is made up of the balances of previous grants which, with agreement of the funders, have been reallocated to spend on the next patient workshop.
SOFIA Paediatric Study
Donation from Trysil Charitable Trust towards a Paediatric Study.
Research fund
This comprises funds received from various sources to fund research into Alkaptonuria.
National AKU Centre
Funding from the Royal Liverpool University Hospital for the Robert Gregory National AKU Centre.
Patient Registry
Crowd source and other funding to support the development and implementation of AKU registry to allow AKU patients and treatments data collection.
Homogentisic Acid Studies
Funding from the Royal Liverpool University Hospital for studies into Homogentisic acid by the Antimicrobial Resistance Centre.
Awards For All
Part of the Big Lottery Fund. The income into this fund covered AKU’s patient conference in Liverpool.
Transfers between funds
There were no material transfers between funds in the year.
22
Docusign Envelope ID: 58B2E84F-AE13-41C0-9279-9CF2BFC2F1E1
THE ALKAPTONURIA SOCIETY LTD
NOTES TO THE FINANCIAL STATEMENTS - continued FOR THE YEAR ENDED 30 JUNE 2025
18. RELATED PARTY DISCLOSURES
There were no related party transactions for the year ended 30 June 2025 or 30 June 2024.
19. INDEPENDENT EXAMINERS' REMUNERATION
| Fees relating to independent examination | 2025 £ - |
2024 £ - |
|---|---|---|
23