2025-03-31-accounts

Relapsing Polychondritis UK (RPUK)

Registered Charity 1170936 Page 1 of 8

Sixth Annual Report and Accounts

Reporting Period 1/04/2024 to 31/03/2025

About Relapsing Polychondritis UK (RPUK)

All future references will be to RPUK.

RPUK is a Charitable Incorporated Organisation.

It is registered with the Charity Commission to operate in England, Wales and Scotland. Registration number 1170936. Date of registration 03/01/2017. Address BRAYS ACCOUNTANTS RIVERVIEW COURT CASTLE GATE WETHERBY LS22 6LE Telephone [phone] Email [e-mail]

Legal purposes

The Objects of RPUK are:

The prevention and relief of sickness for the public benefit principally but not exclusively in the UK, among patients, healthcare professionals, researchers and other stakeholders affected by or wanting to work with any aspect of relapsing polychondritis by:

1. Educating the general public, those affected by relapsing polychondritis, their families and carers by the provision of information, advocacy and support

2. Supporting earlier diagnosis and greater access to treatment by increasing knowledge and awareness of relapsing polychondritis amongst healthcare professionals

3. Increasing understanding of the causes, treatment and potential cure of relapsing polychondritis by promoting and supporting research into all aspects of relapsing polychondritis and publishing the useful results of that research

Relapsing Polychondritis UK (RPUK) POLYCHONESITES Un, Registered Charity 1170936 Page 2 of 8

Mission and aims

Mission Statement

To provide a unifying platform for those living with and working within the field of Relapsing Polychondritis; to raise awareness, increase knowledge and improve access to expertise and treatment.

We aim to:

• Provide reliably sourced information about RP

• Unite the RP community, giving you a voice

About relapsing polychondritis (RP)

The disease

RP is a rare disease affecting 3-5 individuals per million people. It affects both men and women with onset at any age from childhood through to later years, but most frequently in midlife.

It is thought to be an autoimmune disease. The body’s immune system attacks its own cartilage and organs containing tissue similar to cartilage. Joints may become painful, swollen and stiff. The outer ear may become red, painful and deformed. Inflammation of the inner ear may result in nausea, hearing difficulties and loss of balance. The eyes may be affected, and vision may be impaired. Airways may become inflamed and/or collapse leading to coughing and/or breathing difficulties. The heart, blood vessels, liver and kidneys may be affected. Some patients develop skin rashes, head and/or nerve pain, which can be debilitating. Without prompt and effective treatment, RP can be lifethreatening and life-limiting.

Its impact

Before diagnosis

Because RP is a rare disease with no uniform presenting symptoms and no single diagnostic test, it is often misdiagnosed or diagnosed late - not uncommonly, several years after the onset of symptoms. By this time, the patient (and those close to the patient) will have suffered emotionally and psychologically; the patient will have experienced prolonged pain and may have potentially avoidable but now irreversible physical damage; the patient and those close to the patient will be experiencing a consequent reduction in quality of life; relationships are under strain and many do not survive.

After diagnosis

Clinicians

Because RP is a rare disease, many physicians will never have seen a case, and may have no knowledge of its effects or of the range of treatments available. They may never see another case. So, when NHS resources are under extreme pressure, rapid access to information and expertise would be valuable. Because RP can affect many of

Relapsing Polychondritis UK (RPUK)

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the body’s systems (joints, ears, eyes, skin, nerves, airways, etc), this information needs to be available across medical specialties wherever patients may present. Patients and carers

Patient experiences vary considerably depending on whether or not they live in an area where there are physicians with experience and knowledge of RP. Where this is lacking, patients and carers may have to wait longer and travel further at greater cost for appointments; it is likely that there will be fewer treatment options available to them.

Accounts

This annual report accompanies accounts prepared in accordance with the Statement of Recommended Practice ‘Charities SORP (FRS102)’, applicable accounting standards, and the Charities Act 2011. RPUK does not have any employees. RPUK is operated entirely by volunteers. RPUK does not hold any funds as a custodian trustee. RPUK owns no property and its Trustees do not hold title to any property owned by RPUK.

Accounts cover the period 1/04/2024 – 31/03/2025. They were approved by Jill Crossley on 20 January 2026.

This Annual Report was signed by: Tina Clark 26/01/2026 Jill Crossley 26/01/2026 ~~|tog~~

Relapsing Polychondritis UK (RPUK)

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RPUK - ANNUAL PROGRESS REPORT OBJECT COMMENTS Educate the general public and those affected by relapsing polychondritis, their families and carers by the provision of information, advocacy and support Develop website. Increase presence Develop links to/from organisations that have developed information/websites. Develop RP specific literature. Attract funding To ensure sustainability and make a difference over the longer term, RPUK reliably meets its running costs and continues to accumulate funds towards its development work. It, therefore, currently runs at a surplus. RPUK receives both individual and regular donations both directly and through a variety of funding platforms. RPUK re-establish Clinical and Advisory Board with links to existing Increase credibility organisations RPUK - ANNUAL PROGRESS REPORT Increase understanding of the causes, treatment and potential cure of relapsing polychondritis by promoting and supporting research into all aspects of relapsing polychondritis and publishing the useful results of that research. Establish: • Links from/to other organisations with ongoing research • A basic patient register accurately reflecting the population with RP • A patient registry RPUK is not yet funding research. ~~—~~

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Registered Charity 1170936 Page 5 of 8

DONE ONGOING - REASONABLE ONGOING – WORK NEEDED ~~| Oe~~ RPUK - ANNUAL PROGRESS REPORT Governance ~~PO~~ It is important that RPUK: • abides by Charity Commission rules • abides by its own governing document • is transparent. RPUK has had regard to the Charity Commission’s guidance on public benefit (https://www.gov.uk/government/publications/public-benefit-running-a-charity-pb2/publicbenefit https://www.gov.uk/government/publications/public-benefit-running-acharity-pb2/public-benefit-running-a-charity running-a-charity ~~pe~~ Only Trustee personal contact details are withheld as previously authorised by the Charity Commission Trustees • RPUK must have a minimum of 3 and a maximum of 12 Trustees. If the number falls below 3, the remaining Trustee(s) may act only to call a meeting or appoint new Trustee(s). RPUK has no Chair. • Throughout the reporting period 01/04/2024 to 31/03/2025, governors and Treasurer remained unchanged. Clinical and Advisory Board ~~EET~~ The following were appointed in June/July 2017 but are now all subject to review following Covid-19, changing roles and retirement. Professor Martin Birchall, Consultant in ENT Surgery Professor David D’Cruz, Consultant Rheumatologist Mrs Jemma Haines, Consultant Speech and Language Therapist Dr James Hull, Consultant Respiratory Physician Dr David Jayne, Honorary Consultant Physician Dr Rob Niven, Consultant Respiratory Physician Policies Finalise all appropriate policies. Dissolution These are the last Annual Report and Annua l Accounts to be submitted by RPUK. Due to a variety of changing circumstances and physical challenges, more than one Trustee is now finding it difficult to continue in the role. It has not been possible to recruit further Trustees. As a ~~=~~

ee Relapsing Polychondritis UK (RPUK) — Registered Charity 1170936 Page 6 of 8

result, a decision has been taken by its contactable Trustees to stop accepting donations and voluntarily dissolve RPUK.

The Dissolution Process

The Dissolution Process for Foundation CIOs in accordance with the Charitable Incorporated Organisations (Insolvency and Dissolution) Regulations 2012 (the Dissolution Regulations) and the Charitable Incorporated Organisations (General) Regulations 2012 (General Regulations) have been identified and will be followed.

RPUK has a dissolution clause in its Foundation Constitution (Clause 29, Voluntary winding up or dissolution). Financial

As in Clause 8 of its Foundation Constitution “If the CIO is wound up, the Members of the CIO have no liability to contribute to its assets and no personal responsibility for settling its debts and liabilities”. No liquidator is acting for RPUK.

RPUK has no debts, contracts, employees, material assets.

Clause 29 2(c) of the RPUK Foundation Constitution requires “the remaining assets must be applied for charitable purposes the same as or similar to those of the CIO”. Trustees have agreed that all remaining funds should be donated to Research in accordance with RPUK Foundation Objects Clause 3 (3)

“Increasing understanding of the causes, treatment and potential cure of relapsing polychondritis by promoting and supporting research into all aspects of r3elapsing polychondritis and publishing the useful results of that research”.

RPUK is no longer accepting donations from other than Trustees to cover its running costs until the Dissolution Process is complete.

Process

Governance

GDPR requirements Funding platforms For the Charity Commision

Trustees’ Decision Members’ Resolution Trustees’ Declaration Application Following application

Notice of Application within 7 days (by post or hand delivery, not email)) to all Trustees and Members Check Charity Commission RPUK entry for confirmation of receipt of Application Closure

After 3 months (subject to reviews/representations), RPUK will be removed from the Regist3r by the Charity Commission The Charity Commission publishes a Notice of date of removal After Closure

Relapsing Polychondritis UK (RPUK) Registered Charity 1170936 Page 7 of 8

RPUK notifies HMRC that it has closed ~~pT~~

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RELAPSING POLYCHONDRITIS UK (RPUK)

CHARITY ACCOUNTS FOR THE YEAR ENDED 31 MARCH 2025

RELAPSING POLYCHONDRITIS UK (RPUK)

CONTENTS

	PAGE
CHARITY INFORMATION	1
RECEIPTS & PAYMENTS SUMMARY	2
BALANCE SHEET	3
NOTES TO THE ACCOUNTS	4

RELAPSING POLYCHONDRITIS UK (RPUK)

CHARITY INFORMATION FOR THE YEAR ENDED 31 MARCH 2025

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CHARITY REGISTRATION NUMBER 1170936
TRUSTEES ACTIVE DURING THE PERIOD Tina Clark
Jill Crossley
Roy William Clark
TREASURER Jonathan Crossley
REGISTERED ADDRESS BRAYS
Riverview Court
Castle Gare
Wetherby
LS22 6LE
TELEPHONE [phone]
EMAIL [e-mail]
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RELAPSING POLYCHONDRITIS UK (RPUK)

RECEIPTS & PAYMENTS SUMMARY FOR THE YEAR ENDED 31 MARCH 2025

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31 March 2025 31 March 2024
RECEIPTS
Recurring donations 320.00 360.00
One-off donations 55.63 -
Online donation platforms 156.32 210.55
Gift Aid - -
TOTAL RECEIPTS 531.95 570.55
PAYMENTS
Charity running costs 290.51 352.08
TOTAL PAYMENTS (290.51) (352.08)
SURPLUS OF RECEIPTS OVER PAYMENTS 241.44 218.47
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RELAPSING POLYCHONDRITIS UK (RPUK)

BALANCE SHEET

FOR THE YEAR ENDED 31 MARCH 2025

CURRENT ASSETS Current account Gift aid claimed not yet paid	13,282.21 - 31 March 2025	13,282.21 - 31 March 2025	13,040.77 - 31 March 2024	13,040.77 - 31 March 2024
TOTAL ASSETS CURRENT LIABILITIES Owed to trustees re expenses	22.02	13,282.21	22.02	13,040.77
TOTAL LIABILITIES NET ASSETS		(22.02) 13,260.19		(22.02) 13,018.75
CHARITABLE RESERVES Reserves brought forward Surplus for the year	13,018.75 241.44		12,800.28 218.47
RESERVES CARRIED FORWARD		13,260.19		13,018.75

Approved by the trustees on 20 January 2026 and signed on their behalf by:

Jill Crossley - Trustee

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RELAPSING POLYCHONDRITIS UK (RPUK)

NOTES TO THE ACCOUNTS FOR THE YEAR ENDED 31 MARCH 2025

ACCOUNTING POLICIES

Basis of preparation

The accounts have been prepared under the historical cost convention and in accordance with the Statement of Recommended Practice ‘Charities SORP (FRS 102)’, applicable accounting standards and the Charities Act 2011.

Incoming resources

Voluntary income, including donations, which provide the core funding for the charity, is recognised where there is an entitlement, certainty of receipt, and the amount can be measured with sufficent reliability.

Incoming resources from tax reclaims are included in the receipts and payments summary at the same time as the gift to which they relate.

Resources expended

Liabilities are recognised as soon as there is a legal or constructive obligation committing the charity to the expenditure. All expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all costs of a similar nature.

Taxation

As a registered charity, RPUK is generally exempt from Income Tax and Capital Gains Tax, but not from VAT. Irrecoverable VAT is included in the cost of those items to which they relate.

Gift Aid is reclaimed by the charity on donations from individuals from whom the charity has received a signed gift aid declaration.

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