Charity Registration Number
1196811
XLH UK
Annual Report and Unaudited Financial Statements For the Year to 31 January 2026
XLH UK Legal and Administrative Information
Trustees
Dean Fletcher Appointed 28 July 2025 Oliver Gardiner Sally Shaw (nee Hatton) Sarah Mitson Claire Lewis
Charity number:
1196811
Principal Address: 61A Bridge Street, Kington HEREFORDSHIRE HR5 3DJ
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XLH UK
Year to 31 January 2026
CONTENTS
| Page | |
|---|---|
| Legal and Administrative Information | 2 |
| Trustees' report | 4-6 |
| Statement ofTrustees' responsibilities | 7 |
| Independent examiner's report | 8 |
| Statement offinancial activities | 9 |
| Balance sheet | 10 |
| Notes to the accounts | 11-16 |
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XLH UK
Year to 31 January 2026
Trustees Report
Purpose of the Charity
The object of the CIO is the preservation of good health among sufferers of x-linked hypophosphatemia and related disorders by:
a) supporting research for the public benefit into the causes, prevention, diagnosis and methods of treatment of x-linked hypophosphatemia and related disorders and publishing the useful results of that research;
- b) provision of a support network for families suffering from the effects of x-linked hypophosphatemia and related disorders;
c) advocating early diagnosis and well-managed treatment of x-linked hypophosphatemia and related disorders.
Summary of main activities
In its fourth year as a Charitable Incorporated Organisation (CIO) the impact of XLH UK (formerly a charitable trust of the same name) has been seen in 2025 across several areas
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Strong engagement amongst the patient group, which promotes sharing of information and support for those with XLH and their families. This was evident in the positive feedback from the Community Day held in Birmingham in June 2025 and the NI Family Day held in Belfast in July 2025. The peer to peer support program of online meetings has been extended with a buddy system for adults who are starting new treatment.
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Partnership with medical, academic and industry partners as a credible representative of the wider XLH community, which allows us to contribute to the formation of better care pathways and treatments. Specifically, XLH UK has become a key patient partner for the research team at Oxford University, who are studying how burosumab is impacting quality of life for adults with XLH and their caregivers. This long-term study will provide ground-breaking insight into the impact of treating the cause of XLH, rather than the symptoms, for demographics who have not previously been investigated.
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Opportunities to raise awareness of the condition and understanding of the condition. We commissioned a new patient story about planning for a family with XLH, which adds to our collection of award winning patient stories. We also monitored the rollout of new adult treatment across England and Wales, and provided information about the introduction of new delivery methods.
As a rare genetic condition, XLH is not widely understood or supported. Our mission is to help those with XLH and related disorders through research, support and advocacy, allowing them to access their best care and contribute to society.
Public Benefit
The trustees had regard to the guidance issued by the Charity Commission on the Public Benefit requirement under the Charities Act 2011.
Achievements
The charity has made significant progress against all its five strategic objectives over the three year period 2022-2025.
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XLH UK
Year to 31 January 2026
Awareness & standards of care: as part of the Rare Bone Collaborative Network, we have been supporting the establishment of a new NHS Rare Disease Care Network (RDCN) of over 22 hospitals across the UK. Together we have developed a networked service model for care of adults with rare bone conditions in England.
Access to new treatments: We contributed evidence as the lead patient group to Health Technology Assessments for burosumab for adults with XLH, both in England and Wales and in Scotland. The charity welcomes the news that adults with XLH will now be able to access burosumab across the UK.
Information and support: We have held Community Days in Manchester, Bristol and Birmingham with positive feedback. We produce a news digest – XLH UK Navigator – which reaches over half of the UK XLH population. We provide webinars to inform the community about new treatments on the NHS, and we have been building peer-to-peer support programs for those that want to connect.
Research and evidence generation: We built evidence on Quality of Life for adults with XLH based on an extensive survey of UK patients which was presented to NICE as part of the ongoing Health Technology Assessments on access to burosumab. We have produced five patient stories which showcase different aspects of living with XLH. These were recognised at the prestigious MRS Qualitative Research Awards 2025 for their impact.
High performing, sustainable organisation: XLH UK is a founding member of International XLH Alliance, where patient organisations from over 20 countries come together to learn from each other. Our charity has a clear strategic plan and regularly reviews its policies, risk management and fundraising plans to enable it to thrive into the future.
In January 2026 the Board approved a strategic plan for 2026-2028 which recognises the evolving maturity of the organisation and the expectations of the patient community given universal access to burosumab and the establishment of a network of specialist clinics.
Financial Review
This year XLH UK received donations of £6,192 and unrestricted grants of £17,000. Our total expenses were £14,824, which meant that £8,932 was added to unrestricted reserves.
Our balance sheet is healthy with net assets standing at £42,675 of which £10,000 is held in an interest
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XLH UK
Year to 31 January 2026
bearing fixed term savings account.
The largest part of expenses this year relate to activities supporting research, with funds being used on patient stories and our partnership with Oxford University. The trustees are satisfied with the balance between spend on our different core activities given this year’s priorities; for every £10 spent on activities we spent approximately £5 on supporting research, £3 supporting families and £2 on advocacy and awareness.
Reserves Policy
As part of the ongoing review of governance policies, the Board agreed on 16[th] February 2026 to update the reserves policy. To reflect new operational plans, reserves will be increased to £10,000, representing approximately 3 months of anticipated running costs, held in a fixed term interest bearing account.
Going concern
The trustees have reviewed the charity’s financial position and consider that it remains a going concern and fully able to continue to deliver on its long-term objectives.
Structure, Governance and Management
The charity is constituted as a Charitable Incorporated Organisation (CIO) whose only voting members are its charity trustees.
Trustees are appointed for a term of three years by a resolution passed at a properly convened meeting of the charity trustees. In selecting individuals for appointment as charity trustees, the charity trustees have regard to the skills, knowledge and experience needed for the effective administration of the CIO.
A volunteer induction pack is available and includes our Code of Conduct for volunteers / trustees and details of relevant policies as below.
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Health and Safety Policy
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Safeguarding Policy
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Data Protection Policy
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Risk Management Policy
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Complaints Handling
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Social Media policy
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Expenses Policy
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XLH UK policy on working with the pharmaceutical sector.
The charity will have no less than three and no more than seven trustees appointed at any one time. Trustees are empowered to recruit contract staff and to enlist volunteers in order to achieve the objects of the charity. Currently the charity has no permanent employees.
XLH UK has a close relationship with International XLH Alliance (IXLHA) based on historical shared administration. No grants were made by either charity to each other this financial year.
Approved by the Board of Trustees on 27[th] April 2026 and signed on its behalf by:
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XLH UK
Year to 31 January 2026
Sarah Mitson Chair of Trustees STATEMENT OF TRUSTEES' RESPONSIBILITIES
The trustees are responsible forpreparing the Trustees’ Report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice). The law applicable to charities in England and Wales, the Charities Act 2011, Charity (Accounts and Reports) Regulations 2008, require the trustees to prepare financial statements for each financial year which give a true and fair view of the charity’s financial activities during the year and its financial position at the end of the year.
In preparing those financial statements, the trustees are required to:
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select suitable accounting policies and then apply them consistently;
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observe the methods and principles in the Charities SORP (FRS102);
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make judgments and estimates that are reasonable and prudent;
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state whether applicable accounting standards have been followed, subject to any material departures disclosed
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and
explained in the financial statements;
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prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity
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will
continue in operation.
The trustees are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of the charity and to enable them to ensure that the financial statements comply with applicable law. They are also responsible for safeguarding the assets and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.
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Independent Examiner’s Report to the Trustees of the XLH UK For the Year Ended 31 January 2026
I report to the Charity Trustees on my examination of the financial statements of XLH UK (the charity) for the Year to 31 January 2026, which are set out on pages 9-16.
Responsibilities and basis of report
As the trustees of the charity, you are responsible for the preparation of the financial statements in accordance with the requirements of the of the Charities Act 2011 (“the Act”).
I report in respect of my examination of the Charity’s accounts carried out under section 145 of the 2011 Act and in carrying out my examination, I have followed all the applicable Directions given by the Charity Commission under section 145(5)(b) of the Act.
Independent examiner's statement
I have completed my examination. I confirm that no matters have come to my attention which gives me cause to believe that in any material respect:
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1 the accounting records were not kept in accordance with section 130 of the Charities Act; or
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2 the accounts did not accord with the accounting records; or
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3 the accounts did not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 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.
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 financial statements to be reached.
Alison Pierazzini ACA White Rose Accountancy 10, Hatford Faringdon Oxfordshire SN7 8JF
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XLH UK Statement of Financial Activities for the Year to 31 January 2026
| Note Income Income and from: Donations and legacies 2 investments 2 Other 2 Total Income Expenditure Charitable activities 3 Total Expenditure Net Income/ (Expenditure) Net movement in funds Reconciliation of funds: Total funds brought forward 7-8 Total funds carried forward 7-8 |
Unrestricted funds Restricted funds Total funds Last Year £ £ £ £ 23,192 - 23192 12,824 564 - 564 - - - - 428 |
|---|---|
| 23,756 - 23,756 13,252 |
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| 14,824 - 14,824 15,824 |
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| 14,824 - 14,824 15,824 |
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| 8,932 - 8,932 (2,572) |
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| 8,932 - 8,932 (2,572) 28,743 5,000 33,743 36,315 |
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| 37,675 5,000 42,675 33,743 |
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XLH UK Balance Sheet at 31 January 2026
| Unrestricted | Restricted | At 31st | |||
|---|---|---|---|---|---|
| Notes | funds | funds | Total | January2025 | |
| £ | £ | £ | £ | ||
| Current assets | |||||
| investments | 5 | 10,000 | - | 10,000 | 10,000 |
| Cash at bank and in hand | 28,585 | 5,000 | 33,585 | 24,143 | |
| Total current assets | 38,585 | 5,000 | 43,585 | 34,143 | |
| Creditors: amounts falling | |||||
| due within one year | 6 | 910 | - | 910 | 400 |
| Net current assets | 37,675 | 5,000 | 42,675 | 33,743 | |
| Total Net Assets | 37,675 | 5,000 | 42,675 | 33,743 | |
| Funds of the Charity | |||||
| Restricted income funds | 8 | 5.000 | 5,000 | 5,000 | |
| Unrestricted funds | 7 | 37,675 | 37,675 | 28,743 | |
| Total funds | 37,675 | 5,000 | 42,675 | 33,743 |
The financial statements were approved and authorised for issue by the Board of Trustees on 27[th] April 2026.
Signed on behalf of the board of Trustees by
Sarah Mitson
Chair of Trustees
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XLH UK Notes to the Financial Statements for the for the year to 31 January 2026
1. Accounting policies
1.1 Charity information
XLH UK is a registered charity in the United Kingdom. It is structured as a Charitable Incorporated Organisation. The principal address of the Charity is 61 Bridge Street, Kington, HR5 3DJ
1.2 Accounting convention
The accounts (financial statements) have been prepared under the historical cost convention with items recognised at cost or transaction value, and in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS102), Statement of Recommended Practice: Accounting and Reporting by Charities (Revised 2019) applicable to charities preparing their accounts in accordance with FRS102 (‘Charities SORP (FRS102)’), and the Charities Act 2011.
The Charity meets the definition of a public benefit entity under FRS 102
The financial statements are prepared in sterling, which is the functional currency of the charity. Monetary amounts in these financial statements are rounded to the nearest £.
The charity has taken advantage of the exemption in Financial Reporting Standards from the requirement to prepare a cash flow statement on the grounds that it is a small charity.
The principal accounting policies adopted are set out below.
1.3 Going concern
At the time of approving the financial statements, the trustees have a reasonable expectation that the charity has adequate resources to continue in operational existence for the foreseeable future. Thus, the trustees continue to adopt the going concern basis of accounting in preparing the financial statements.
1.4 Charitable funds
Unrestricted funds are available for use at the discretion of the trustees in furtherance of their charitable objectives unless the funds have been designated for other purposes.
Restricted funds are subject to specific conditions by donors as to how they may be used.
1.5 Incoming resources
Income is recognised when the charity is legally entitled to it after any performance conditions have been met, the amounts can be measured reliably, and it is probable that income will be received.
Donations and grants are recognised once the charity has been notified of the donation unless performance conditions require deferral of the amount. Income tax recoverable in relation to donations received under Gift Aid or deeds of covenant is recognised at the time of the donation.
1.6 Resources expended
Expenditure is recognised on an accruals basis as a liability is incurred. Expenditure includes any VAT which cannot be recovered and is reported as part of the expenditure to which it relates.
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XLH UK Notes to the Financial Statements for the for the year to 31 January 2026
1. Accounting policies
(Continued)
Charitable expenditure comprises those costs incurred by the charity in the delivery of its activities and services to beneficiaries. It includes both costs that can be allocated directly to such activities and those costs of an indirect nature necessary to support them.
Volunteers
The value of services provided by volunteers is not incorporated in these financial statements.
Further details of their contribution is set out in note 3 to these financial statements.
1.7 Taxation
The charity is an exempt charity within the meaning of schedule 3 of the Charities 2011 and therefore meets the criteria to be defined as a charity for corporation tax purposes.
1.8 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. Accrued income and tax recoverable is included at the best estimate of the amounts receivable at the balance sheet date.
1.9 Current Asset investments
Current Asset Investment are short term fixed term bank deposits with a maturity of 1 year or less from the date of deposit .
1.10 Cash and cash equivalent
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 of the deposit or similar accou nt.
1.12 Creditors
Creditors 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 are normally recognised at their settlement amount after allowing for any trade discounts due.
1.11 Financial instruments
The charity has elected to apply the provisions of Section 11 ‘Basic Financial Instruments’ and Section 12 ‘Other Financial Instruments Issues’ of FRS 102 to all of its financial instruments.
Financial instruments are recognised in the charity's balance sheet when the charity becomes party to the contractual provisions of the instrument.
Financial assets and liabilities are offset, with the net amounts presented in the financial statements, when there is a legally enforceable right to set off the recognised amounts and there is an intention to settle on a net basis or to realise the asset and settle the liability simultaneously.
Basic financial assets
Basic financial assets, which include debtors and cash and bank balances, are initially measured at transaction price including transaction costs and are subsequently carried at amortised cost using the effective interest method unless the arrangement constitutes a financing transaction, where the transaction is measured at the present value of the future receipts discounted at a market rate of interest. Financial assets classified as receivable within one year are not amortised.
Basic financial liabilities
Basic financial liabilities, including creditors are initially recognised at transaction price unless the arrangement constitutes a financing transaction, where the debt instrument is measured at the present value of the future payments discounted at a market rate of interest. Financial liabilities classified as payable within one year are not amortised.
Trade creditors are obligations to pay for goods or services that have been acquired in the ordinary course
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XLH UK Notes to the Financial Statements for the for the year to 31 January 2026
of operations from suppliers. Amounts payable are classified as current liabilities if payment is due within one year or less. If not, they are presented as non-current liabilities. Trade creditors are recognised initially at transaction price and subsequently measured at amortised cost using the effective interest method.
1.13 Critical accounting estimates and judgements
Estimates and judgements are continually evaluated and are based on historical experience and other factors, including expectations of future events that are believed to be reasonable under the circumstances. The Charity makes estimates and assumptions concerning the future. The resulting accounting estimates and assumptions will, by definition, seldom equal the related actual results.
No judgements (apart from those involving estimates) have been made in the process of applying the above accounting policies.
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XLH UK
Notes to the Financial Statements for the for the year to 31 January 2026
2. Income
Donations and Legacies
This Year
| Donations Grants Total |
This Year Last Year Unrestricted Restricted Total Unrestricted Restricted Total £ £ £ £ £ £ 6,192 - 6,192 2,824 - 2,824 17,000 - 17,000 5,000 5,000 10,000 |
| 23,192 - 23,192 7,824 5,000 12,824 |
Investment Income
| Bank Interest Total |
Unrestricted Income Restricted income Total Income Last Year £ £ £ £ 564 - 564 - |
|---|---|
| 564 - 564 - |
Other Income
| Speaker and other fee Income Total |
Unrestricted Income Restricted income Total Income Last Year £ £ £ £ - - - 428 |
|---|---|
| - - - 428 |
All other income in the previous year was unrestricted
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XLH UK
Notes to the Financial Statements for the for the year to 31 January 2026
3. Expenditure
Expenditure on charitable activities
| Family Support Research Public Awareness and Advocacy General Administration Total |
Unrestricted Restricted Total This Year Unrestricted Restricted Total Last Year £ £ £ £ £ 4,031 - 4,031 5,145 - 5,145 5,923 - 5,923 6,242 - 6,242 3,222 - 3,222 2,809 - 2,809 1,648 - 1,648 1,628 - 1,628 |
|---|---|
| 14,824 - 14,824 15,824 - 15,824 |
Included in the expenditure on charitable activities are:
Fees payable to the Independent Examiner
| For examination of the accounts Total |
This Year Last Year £ £ 500 400 |
|---|---|
| 500 400 |
Staff Numbers
There were no staff employed by the Charity during the year.
Volunteers
The charity is very grateful for the work carried out by a volunteer who helps with Communications.
4.Trustees and Key Management Personnel
None of the trustees (or any persons connected with them) received any remuneration or benefits, from the charity during the year.
5 of the trustees incurred travel costs during the year totalling £612.
5. Current Asset Investments
| . Current Asset Investments | |
|---|---|
| Fixed Term Bank Deposit Total |
This Year Last Year £ 10,000 10,000 |
| 10,000 10,000 |
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XLH UK
Notes to the Financial Statements for the for the year to 31 January 2026
6. Creditors: Amounts falling due within one year
| Accruals and deferred income Total All creditors were unrestricted. 7. Unrestricted Funds This Year General Fund Total Last Year General Fund Total 8. Restricted Funds This Year Balance at 1 February 2025 £ Other restricted Funds 5,000 5,000 Last Year Balance at 1 February 2024 £ Other restricted Funds - - |
Accruals and deferred income Total All creditors were unrestricted. 7. Unrestricted Funds This Year General Fund Total Last Year General Fund Total 8. Restricted Funds This Year Balance at 1 February 2025 £ Other restricted Funds 5,000 5,000 Last Year Balance at 1 February 2024 £ Other restricted Funds - - |
This Year Last Year £ 910 400 910 400 Balance at 1 February 2025 Income Expenditure Transfers Balance at 31January2026 £ £ £ £ £ 28,743 23,756 (14,824) - 37,675 |
|---|---|---|
| 28,743 23,756 (14,824) - 37,675 |
||
| Balance at 1 February 2024 Income Expenditure Transfers Balance at 31January2025 £ £ £ £ £ 36,315 8,252 (15,824) - 28,743 |
||
| 36,315 8,252 (15,824) - 28,743 |
||
| Income Expenditure Transfers Balance at 31January2026 £ £ £ £ - - - 5,000 - - - 5,000 Income Expenditure Transfers Balance at 31January2025 £ £ £ £ 5,000 - - 5,000 5,000 - - 5,000 |
||
| 5,000 | ||
| Balance at 1 February 2024 £ - |
||
| - |
9. Analysis of Net Assets between Funds
| Current Assets Current Liabilities |
At 31 January 2026 At 31 January 2025 Unrestricted Restricted Total Unrestricted Restricted Total £ £ £ £ £ £ 38,585 5,000 43,585 29,143 5,000 34,143 (910) - (910) (400) - (400) |
|---|---|
| 37,675 5,000 42,675 28,743 5,000 33,743 |
10. Related party transactions
There have been no related party transactions during the financial year.
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