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← The British Porphyria Association

2025-03-31-accounts

Charity Registration Number: 1089609

The British Porphyria Association

Financial Statements

For the Year Ending

31 March 2025

JANE ASCROFT ACCOUNTANCY LIMITED

Chartered Accountants Enterprise House Harmire Enterprise Park Barnard Castle County Durham DL12 8XT

The British Porphyria Association

Financial Statements

Year Ended 31 March 2025

Page
Trustees' Annual Report 1
Independent Examiner's Report to the Trustees 8
Statement of Financial Activities 9
Statement of Financial Position 10
Notes to the Financial Statements 11
The Following Pages Do Not Form Part of the Financial Statements
Detailed Statement of Financial Activities 19

The British Porphyria Association

Trustees' Annual Report

Year Ended 31 March 2025

The trustees present their report and the unaudited financial statements of the charity for the year ended 31 March 2025.

Objectives and Aims

The charity's objectives are the relief of sickness and the protection and preservation of the health of persons affected by Porphyria and any related condition and their families and carers, in particular by, but not restricted to:

a) The advancement of the education of the medical profession and the general public into Porphyria and its implications for the family.

b) The promotion of research into the causes, effects, treatment and management of Porphyria and to disseminate the useful results thereof.

Activities and Achievements

The 2024-2025 financial year was superbly busy. We continued to work towards our aims to advocate for, support and educate porphyria patients, relatives and medical professionals, to improve the quality of life for those living with the different types of porphyria. We continued to promote awareness and the advancement of research into new therapies.

We expanded our themes of support by adding SHARE to our themes of CONNECT, UNDERSTAND and TAKE CONTROL.

Porphyria Awareness

Porphyria Awareness Week ran from 11 - 18 May 2024, with Global Porphyria Day (GPD) being celebrated on 18 May 2024.

The week provided the opportunity to engage in awareness and fundraise about porphyria as well as opportunities for patients and their families and friends to share insight into Porphyria via the hashtags #MyPorphyria, #SpotlightPorphyria and #PurpleForPorphyria. A toolkit of resources was added to the website to assist and encourage people to take part this included template letters and posters.

1

The British Porphyria Association

Trustees' Annual Report (continued)

Year Ended 31 March 2025

Conferences And Events

In June and September 2024, online Peer Support Group Drop-In Sessions were held to support patients with EPP/XLP and other porphyrias. The sessions were open to all ages, and families affected were encouraged to attend together. This is a programme of support that aims to help people living with porphyria to understand their condition, connect with others and build the confidence to take control and share their story to help promote porphyria awareness. Our 2024 AGM was held in conjunction with the September Peer Support session.

On 8 June 2024 the BPA held a Strategy meeting in Newark, attended in person by the CEOs, Chair, Trustees and volunteers. The purpose of the meeting was to review the overarching aims of the BPA, feedback on projects and review outcomes of the past 12 months. The second half of the day was spent on creating a strategic plan and prioritising the focus points for the charity for 2025 to 2027.

In October 2024 the BPA held the first Alfresco Residential for those affected by EPP and XLP at Thorpe Woodlands, Norfolk.

Making use of protective clothing and the excellent tree cover, 15 families affected by EPP/XLP from across the UK and Ireland, were able to avoid the sun and concentrate on the most important things - connecting with others with porphyria and participating in outdoor-based events and activities that they would not normally consider to be possible. Activities included climbing, zip-wires, tree top walks, fan drops, archery and caving.

The BPA also facilitated a Q&A session for parents of the participants, featuring the Chair and CEOs of the BPA, and offered one-on-one counselling sessions with an accredited counsellor for those seeking individual support.

The event was filmed by a volunteer videography team who, as well as filming the activities, also interviewed the young people taking part and their parents and siblings to gain an insight into the impact of living with EPP. The footage has been used to create two videos. One video 'Empowering people with porphyria' captures the atmosphere and impact of the day, offering a glimpse into the vital work the BPA is doing and the importance of bringing people together. The second video, 'We're not alone' shares a deeply personal story of living with EPP, told through the eyes of Tiernan and Niamh, a family navigating life with this rare condition. Further footage will be used in the coming months to create informative videos about living with EPP for future awareness campaigns.

In total 52 people attended the event, comprising of: 7 x BPA staff/volunteers (3 x EPP), 4 x EPP Defenders/volunteers - who were there to support the children and young people with EPP/XLP, 15 x EPP families/households, 4 x Videographers (2 x EPP) and 1 x Counsellor.

This event was made possible thanks to the generous support of our fundraisers, as well as support from the National Lottery Community Fund, the Alpkit Foundation, the Society for the Study of Inborn Errors of Metabolism (SSIEM), Mitsubishi Tanabe Pharma Company, Clinuvel Pharmaceuticals Ltd, Disc Medicine, Alnylam Pharmaceuticals and Coolibar Sun Protection Clothing.

The aim of the weekend was to empower young people with EPP/XLP to help them understand their condition, connect with others with EPP/XLP, build the confidence to take control, and share their story. Survey results and informal feedback indicated that this aim was successfully achieved. By bringing together children, young people, and parents affected by these conditions, the event fostered meaningful connections and lasting friendships-both among individuals with EPP/XLP and among their parents-that continue to flourish.

The BPA is extremely proud to have facilitated a weekend full of connection, support, and encouragement, and to have created a unique space to strengthen this vibrant community.

The 2025 Patient Conference was held on Saturday 29 March 2025 at the National Museum of Wales in Cardiff. Attendees included medical professionals from Cardiff, Dundee and London, individuals

2

The British Porphyria Association

Trustees' Annual Report (continued)

Year Ended 31 March 2025

with lived experience of porphyria, patients and their families, industry representatives, and international researchers. The event provided a valuable platform for knowledge exchange, with opportunities for learning and peer support.

Importantly, the conference reached newly diagnosed patients and individuals not previously known to the BPA, enabling us to extend our support to a broader community. This represents a significant outcome in addition to the day's wider benefits.

The previous day, members of the BPA team participated in the BIPNET (British & Irish Porphyria Network) Annual Conference, contributing to discussions and presentations. This ongoing collaboration between BIPNET and the BPA continues to strengthen the shared aims of education, best practice, and mutual support across the porphyria community.

International Events

The BPA were represented at ICPP2024 in Pamplona (Spain) between 21-25 September 2024, by Liz Gill (co-CEO), Sue Burrell (co-CEO) and Vicky McGuire (Chair). This was the biggest International Congress of Porphyrins and Porphyria's held to date. They attended talks and gathered information on topics ranging from porphyria awareness to diagnosis, treatments, patient support and the long-term complications of living with porphyria. Reporting back to the BPA they shared that there was a real sense of excitement and positivity for the future of porphyria treatments and gave updates on existing medications as well as newer drugs entering clinical trials.

BPA Team

John Chamberlayne and Richard Bennett stood down from their positions of BPA Chair and Secretary respectively having served the BPA for more than 20 years, they both remain as Trustees.

Dr Vicky McGuire has taken on the BPA Chair role, and Victoria Harrold the role of Secretary.

Website, Social Media & Helplines

With the continuing support our fundraising and communications officer, the BPA have continued to broaden our reach and interaction on social media. Content interaction saw a 46% increase on the prior year and our reach increased by a further 3%.

Twice yearly newsletters were produced and sent out to our members, where BPA funds were used for administration fees, printing and postage. A successful Christmas fundraising campaign was held again in 2024, selling Christmas cards and baubles.

Advocacy

We have continued to play an active role in the appraisal of new treatments for porphyria, maintaining close collaboration with researchers and pharmaceutical companies to ensure that the patient perspective is integrated from the earliest stages of development. Our involvement helps to ensure that the real-life impact of porphyria on patients and families is considered throughout the research and regulatory process.

The BPA is also well represented on the international stage.

Dr Vicky McGuire (BPA Chair) was elected to the Ipnet (International Porphyria Network) Executive Board as Treasurer from January 2025 (Ipnet is a global clinician-led network). Vicky also plays an active role in the Ipnet Porphyria Expert Clinical Centres (PECC) working group, which evaluates porphyria centres for recognition as expert centres. Liz Gill, Co-CEO, served as the patient representative on the Ipnet Board until December 2024, stepping down after six years in the role. She remains a key contributor to IPNET's Acute Clinical Guidelines project, which is working to develop evidence-based international guidelines for the management of acute porphyria-an initiative that has the potential to significantly improve patient care worldwide, and is a member of the PECC working group alongside Dr Vicky McGuire.

3

The British Porphyria Association

Trustees' Annual Report (continued)

Year Ended 31 March 2025

Sue Burrell, Co-CEO, continues to hold a vital leadership role as President of the Global Porphyria Advocacy Coalition (GPAC). In this capacity, Sue works closely with patient organisations and pharmaceutical partners around the world to raise awareness of the porphyrias, develop educational resources for patients, and ensure that the BPA remains actively engaged in international collaborations and emerging drug development efforts.

Grant Making

It is the policy of the charity to give assistance to sufferers of porphyria to help towards their medical and physical requirements. We continue to support patients with additional needs due to their porphyria via a discretionary grant scheme. Funds are also made available to assist our members to attend our events where travel or accommodation costs would otherwise make it prohibitive for them to attend.

Monies in the Helen Gibbs Fund will continue to be allocated to acute porphyria patients who are eligible to receive the new treatment Givlaari, but who are unable to cover the cost of travelling to a porphyria centre to be able to receive this life changing treatment. These patients will need to visit a porphyria centre once a month for the first six months to receive the treatment and for ongoing monitoring and data collection. After the first six months, patients will receive their treatment at home. We expect there to be a handful of new patients each year that need this support for the first six months of treatment.

4

The British Porphyria Association

Trustees' Annual Report (continued)

Year Ended 31 March 2025

Financial Review

The BPA funds at 31 March 2025 consist of general funds of £47,420 and restricted funds totalling £19,907: £17,290 in the Helen Gibbs fund for research into acute porphyria, £1,385 in the Light Protection Fund reserved for grants to EPP patients and £1,232 in the Festival 2019 fund.

Our reserves policy is to hold sufficient funds to fund working capital and, as the charity is growing, to fund unexpected expenditure. These will include relevant meetings, for example the charity’s involvement in the approval process of new drugs and attending meetings in the UK and overseas in the interests of the charity and our members. It will also include providing additional paid hours to fulfil other required obligations. As the charity’s income is by way of subscriptions and donations the reserves will be used to cover any shortfalls in income or changes in circumstances.

Funding

BPA income derives from donations, fundraising and sponsored events, merchandise sales, grants, and sponsorship.

Thank you to all who have made donations and have raised funds for the BPA. We really couldn't continue to do the work that we are doing without these amazing efforts.

We were greatly touched to receive a generous legacy donation in memory of Margaret Theresa Seary, who had AIP and had been a long-term supporter of the BPA.

We were the recipients of a National Lottery Community Fund grant which significantly contributed to the costs incurred in the 2024 Connect Alfresco event.

Our corporate supporters, Alnylam Pharmaceuticals, Disc Medicine, Mitsubishi Tanabe Pharma Company, Clinuvel UK, Alpkit Foundation and Portal Theraputics inc helped to support our patient events and attendance of key BPA personnel at other events. Their sustained assistance enables us to continue helping and supporting porphyria patients and their families through valued BPA events and opportunities to gain further knowledge.

In July 2024, Clinuvel Ltd very generously donated over 400 bottles of CYACELLE Polychromatic Solar Protection large particle sun cream which we were able to send out to our skin porphyria community at a time when there were little other sunscreen protection options available. This was a huge help to our members and saw us reach many new patients via a social media campaign.

During the 2025-2026 financial year, we will be seeking funding to enable us to focus on, strengthen and protect our core organisational resilience as part of a development project.

5

The British Porphyria Association

Trustees' Annual Report (continued)

Year Ended 31 March 2025

Future Developments

In 2024, the BPA undertook a review and update of its two-year strategic plan. Building on our core principles of advocacy, support, education and research, and guided by the thematic pillars of Understand, Connect, Take Control and Share, we set out a number of key objectives for the coming year, in addition to the charity's ongoing operational activities:

 Organisational resilience: To strengthen the long-term sustainability of the BPA, we will begin work on updating internal systems and processes, investing in technology, and developing a succession planning framework to ensure continuity and operational effectiveness.

 Research engagement: We will support a range of studies and research projects, and maintain active collaboration with industry partners to encourage patient involvement and contribute to a more comprehensive understanding of the porphyria patient journey.

 Mental health focus: We will continue to prioritise the mental health and emotional wellbeing of individuals living with porphyria, recognising it as a critical component of holistic patient care.

 Legacy video resources: We aim to complete the editing of video content from the 2019 Festival event and the 2024 Connect Alfresco event. These resources will form part of a digital knowledge repository accessible to patients, families, healthcare professionals and the wider public, raising awareness and improving understanding of porphyria.

 Peer support: We will continue to offer online Peer Support Drop-in Sessions throughout 2025, providing regular opportunities for informal connection, mutual support and shared experience among community members.

 Annual General Meeting: Plans are in place to host the 2025 AGM as an in-person event, combined with a social and activity-based gathering in the Greater London area in Autumn 2025. As always, we continue to encourage and support research into finding better treatments for all the porphyrias, and maintain and foster networks in the UK, Europe and globally.

Structure, Governance and Management

Governing document

The charity is governed by a constitution which is available from the trustees and represents an unincorporated charity.

Risk management

The trustees have a duty to identify and review the risks to which the charity is exposed and to ensure appropriate controls are in place to provide reasonable assurance against fraud and error.

Re-appointment of trustees

The trustees hold office for three years with no more than one third retiring at the annual general meeting. Subject to eligibility those retiring may be re-elected or re-appointed.

6

The British Porphyria Association

Trustees' Annual Report (continued)

Year Ended 31 March 2025

Reference and Administrative Details

Registered charity name The British Porphyria Association Charity registration number 1089609 Principal office 136 Devonshire Road Durham City County Durham DH1 2BL The Trustees A Newton J W Chamberlayne (Chair until 30 September 2024) K E Harris A Molyneux R Bennett (Secretary until 30 September 2024) N Chadwick V Harrold (Secretary from 30 September 2024) V McGuire (Chair from 30 September 2024) C Jarvis (Treasurer) Independent Examiner Jane Ascroft FCA MA (Cantab) Enterprise House Harmire Enterprise Park Barnard Castle County Durham DL12 8XT

The trustees' annual report was approved on .............................. and signed on behalf of the board of trustees by:

V McGuire (Chair) Trustee

7

The British Porphyria Association

Independent Examiner's Report to the Trustees of The British Porphyria Association

Year Ended 31 March 2025

I report to the trustees on my examination of the financial statements of The British Porphyria Association ('the charity') for the year ended 31 March 2025.

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 Charities Act 2011 (‘the Act’).

I report in respect of my examination of the charity's financial statements 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 material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:

  1. accounting records were not kept in respect of the charity as required by section 130 of the Act; or

  2. the financial statements do not accord with those records; or

  3. the financial statements do 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 accounts to be reached.

Jane Ascroft FCA MA (Cantab) Independent Examiner

Enterprise House Harmire Enterprise Park Barnard Castle County Durham DL12 8XT

8

The British Porphyria Association

Statement of Financial Activities

Year Ended 31 March 2025

2025 2024
Unrestricted Restricted
funds funds Total funds Total funds
Note £ £ £ £
Income and endowments
Donations 4 63,601 18,937 82,538 34,556
Other trading activities 5 689 – 689 81
Investment income 6 592 280 872 372
Other income 7 1,964 – 1,964 3,645
──────── ──────── ──────── ────────
Total income 66,846 19,217 86,063 38,654
════════ ════════ ════════ ════════
Expenditure
Expenditure on raising funds:
Costs of other trading activities 8 19 – 19 203
Expenditure on charitable activities 9,10 33,608 18,982 52,590 43,959
──────── ──────── ──────── ────────
Total expenditure 33,627 18,982 52,609 44,162
════════ ════════ ════════ ════════
──────── ──────── ──────── ────────
Net income/(expenditure) and net
movement in funds 33,219 235 33,454 (5,508)
════════ ════════ ════════ ════════
Reconciliation of funds
Total funds brought forward 14,201 19,672 33,873 39,381
──────── ──────── ──────── ────────
Total funds carried forward 47,420 19,907 67,327 33,873
════════ ════════ ════════ ════════

The statement of financial activities includes all gains and losses recognised in the year. All income and expenditure derive from continuing activities.

The notes on pages 11 to 17 form part of these financial statements.

9

The British Porphyria Association

Statement of Financial Position

31 March 2025

2025 2024
Note £ £
Current Assets
Cash at bank and in hand 67,627 34,727
Creditors: amounts falling due within one year 15 300 854
──────── ────────
Net Current Assets 67,327 33,873
──────── ────────
Total Assets Less Current Liabilities 67,327 33,873
──────── ────────
Net Assets 67,327 33,873
════════ ════════
Funds of the Charity
Restricted funds 19,907 19,672
Unrestricted funds 47,420 14,201
──────── ────────
Total charity funds 17 67,327
════════		 33,873
════════

These financial statements were approved by the board of trustees and authorised for issue on ........................, and are signed on behalf of the board by:

Claire Jarvis

C Jarvis (Treasurer) Trustee

The notes on pages 11 to 17 form part of these financial statements.

10

The British Porphyria Association

Notes to the Financial Statements

Year Ended 31 March 2025

1. General Information

The charity is a public benefit entity and a registered charity in England and Wales and is unincorporated. The address of the principal office is 136 Devonshire Road, Durham City, County Durham, DH1 2BL.

2. Statement of Compliance

These financial statements have been prepared in compliance with FRS 102, 'The Financial Reporting Standard applicable in the UK and the Republic of Ireland', the 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) (Charities SORP (FRS 102)) and the Charities Act 2011.

3. Accounting Policies

Basis of Preparation

The financial statements have been prepared on the historical cost basis, as modified by the revaluation of certain financial assets and liabilities and investment properties measured at fair value through income or expenditure.

The financial statements are prepared in sterling, which is the functional currency of the entity.

Going Concern

There are no material uncertainties about the charity's ability to continue.

Judgements and Key Sources of Estimation Uncertainty

The preparation of the financial statements requires management to make judgements, estimates and assumptions that affect the amounts reported. These estimates and judgements are continually reviewed and are based on experience and other factors, including expectations of future events that are believed to be reasonable under the circumstances. The Trustees consider that there are no significant estimates or judgements affecting these financial statements.

Fund Accounting

Unrestricted funds are available for use at the discretion of the trustees to further any of the charity's purposes.

Designated funds are unrestricted funds earmarked by the trustees for particular future project or commitment.

Restricted funds are subjected to restrictions on their expenditure declared by the donor or through the terms of an appeal, and fall into one of two sub-classes: restricted income funds or endowment funds.

11

The British Porphyria Association

Notes to the Financial Statements (continued)

Year Ended 31 March 2025

3. Accounting Policies (continued)

Income

All income is included in the statement of financial activities when entitlement has passed to the charity, it is probable that the economic benefits associated with the transaction will flow to the charity and the amount can be reliably measured. The following specific policies are applied to particular categories of income:

Expenditure

Expenditure is recognised on an accruals basis as a liability is incurred. Expenditure includes any VAT which cannot be fully recovered, and is classified under headings of the statement of financial activities to which it relates:

All costs are allocated to expenditure categories reflecting the use of the resource. Direct costs attributable to a single activity are allocated directly to that activity. Shared costs are apportioned between the activities they contribute to on a reasonable, justifiable and consistent basis.

Financial Instruments

The charity only has financial assets and 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.

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.

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 of the deposit or similar account.

12

The British Porphyria Association

Notes to the Financial Statements (continued)

Year Ended 31 March 2025

3. Accounting Policies (continued)

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.

Taxation

The company is considered to pass the tests set out in Paragraph 1 Schedule 6 of the Finance Act 2010 and therefore it meets the definition of a charitable company for UK corporation tax purposes. Accordingly, the company is potentially exempt from taxation in respect of income or capital gains received within categories covered by Chapter 3 Part 11 of the Corporation Tax Act 2010 or Section 256 of the taxation of Chargeable Gains Act 1992, to the extent that such income or gains are applied exclusively to charitable purposes.

4. Donations

Unrestricted Restricted Total Funds
Funds Funds 2025
£ £ £
Donations
Donations and subscriptions 20,613 1,377 21,990
Gift aid 4,125 – 4,125
Legacies
Legacies 10,000 – 10,000
Grants
Clinuvel Pharmaceuticals 2,000 – 2,000
Alnylam 6,555 – 6,555
Mitsubishi Tanab 10,000 – 10,000
National Lottery Community Fund – 17,560 17,560
Portal Therapeutic 8,629 – 8,629
The Society for Inborn Errors of Metabolism (SSIEM) 1,679 – 1,679
──────── ──────── ────────
63,601 18,937 82,538
════════ ════════ ════════

13

The British Porphyria Association

Notes to the Financial Statements (continued)

Year Ended 31 March 2025

4. Donations (continued)

Unrestricted Restricted Total Funds
Funds Funds 2024
£ £ £
Donations
Donations and subscriptions 10,982 – 10,982
Gift aid 1,069 – 1,069
Other income 482 – 482
Grants
Clinuvel Pharmaceuticals 2,000 – 2,000
Alnylam 10,000 – 10,000
Mitsubishi Tanab – – –
Disc Medicine 9,523 – 9,523
Alpkit – 500 500
──────── ──── ────────
34,056 500 34,556
════════ ════ ════════
5. Other Trading Activities
Unrestricted Total Funds Unrestricted Total Funds
Funds 2025 Funds 2024
£ £ £ £
Merchandise sales 689 689 81 81
════ ════ ════ ════
6. Investment Income
Unrestricted Restricted Total Funds
Funds Funds 2025
£ £ £
Bank interest receivable 592 280 872
Dividends receivable – – –
──── ──── ────
592 280 872
════ ════ ════
Unrestricted Restricted Total Funds
Funds Funds 2024
£ £ £
Bank interest receivable 132 228 360
Dividends receivable 12 – 12
──── ──── ────
144 228 372
════ ════ ════
7. Other Income
Unrestricted Total Funds Unrestricted Total Funds
Funds 2025 Funds 2024
£ £ £ £
Consultancy fees 1,964 1,964 3,645 3,645
═══════ ═══════ ═══════ ═══════

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The British Porphyria Association

Notes to the Financial Statements (continued)

Year Ended 31 March 2025

8. Costs of Other Trading Activities

Unrestricted
Total Funds		 Unrestricted Total Funds
Funds
2025		 Funds 2024
£ £ £ £
Merchandise costs 19
19		 203 203
════
════		 ════ ════
9. Expenditure on Charitable Activities by Fund Type
Unrestricted Restricted Total Funds
Funds Funds 2025
£ £ £
Costs of charitable activities 33,608 18,982 52,590
════════ ════════ ════════
Unrestricted Restricted Total Funds
Funds Funds 2024
£ £ £
Costs of charitable activities 43,796 163 43,959
════════ ════ ════════
10. Expenditure on Charitable Activities by Activity Type
Activities
undertaken
Grant funding		 Total funds Total fund
directly
of activities		 2025 2024
£ £ £ £
Costs of charitable activities 52,500
90		 52,590 43,959
════════
════		 ════════ ════════
11. Analysis of Grants
2025 2024
£ £
Grants to Individuals
Travel bursaries – 50
Other grants 90 113
──── ────
Total grants 90 163
════ ════
12. Independent Examination Fees
2025 2024
£ £
Fees payable to the independent examiner for:
Independent examination of the financial statements 300 300
════ ════
13. Staff Costs

The average head count of employees during the year was Nil (2024: Nil).

15

The British Porphyria Association

Notes to the Financial Statements (continued)

Year Ended 31 March 2025

13. Staff Costs (continued)

No employee received employee benefits of more than £60,000 during the year (2024: Nil).

14. Trustee Remuneration and Expenses

There were no trustees' remuneration or other benefits for the current or previous year.

During the year travel expenses of £1,669 were reimbursed to 8 trustees (2024 - £1,046 to 4 trustees).

15. Creditors: amounts falling due within one year

2025 2024
£ £
Accruals and deferred income 300 854
════ ════
Deferred Income
2025 2024
£ £
At 1 April 2024 554 –
Amount released to income (554) –
Amount deferred in year – 554
──── ────
At 31 March 2025 – 554
════ ════

16. Deferred Income

17. Analysis of Charitable Funds

Unrestricted funds

Unrestricted funds
At At 31 March
1 April 2024 Income Expenditure 2025
£ £ £ £
General funds 14,201 66,846 (33,627) 47,420
════════ ════════ ════════ ════════
At At 31 March
1 April 2023 Income Expenditure 2024
£ £ £ £
General funds 20,274 37,926 (43,999) 14,201
════════ ════════ ════════ ════════

16

The British Porphyria Association

Notes to the Financial Statements (continued)

Year Ended 31 March 2025

17. Analysis of Charitable Funds (continued)

Restricted funds

Restricted funds
At At 31 March
1 April 2024 Income Expenditure 2025
£ £ £ £
Helen Gibbs Fund 17,038 252 – 17,290
Light Protection Fund 920 1,387 (922) 1,385
Festival 2019 fund 1,214 18 – 1,232
National Lottery Community Fund – 17,560 (17,560) –
Alpkit 500 – (500) –
──────── ──────── ──────── ────────
19,672 19,217 (18,982) 19,907
════════ ════════ ════════ ════════
At At 31
1 April 2023 Income Expenditure March 2024
£ £ £ £
Helen Gibbs Fund 16,885 203 (50) 17,038
Light Protection Fund 1,022 11 (113) 920
Festival 2019 fund 1,200 14 – 1,214
Alpkit – 500 – 500
──────── ──── ──── ────────
19,107 728 (163) 19,672
════════ ════ ════ ════════

The Helen Gibbs fund is for research into acute porphyria and the Light Protection Fund is reserved for grants to EPP patients.

The Festival 2019 fund includes a grant from Orphan Europe to help towards our Porphyria Festival in October 2019 to celebrate our 20th anniversary.

18. Analysis of Net Assets Between Funds

Unrestricted Restricted Total Funds
Funds Funds 2025
£ £ £
Current assets 47,720 19,907 67,627
Creditors less than 1 year (300) – (300)
──────── ──────── ────────
Net assets 47,420 19,907 67,327
════════ ════════ ════════
Unrestricted Restricted Total Funds
Funds Funds 2024
£ £ £
Current assets 15,055 19,672 34,727
Creditors less than 1 year (854) – (854)
──────── ──────── ────────
Net assets 14,201 19,672 33,873
════════ ════════ ════════

17

The British Porphyria Association

Management Information

Year Ended 31 March 2025

The Following Pages Do Not Form Part of the Financial Statements.

18

The British Porphyria Association

Detailed Statement of Financial Activities

Year Ended 31 March 2025

2025 2024
£ £
Income and endowments
Donations
Donations and subscriptions 21,990 10,982
Gift aid 4,125 1,069
Other income – 482
Legacies 10,000 –
Clinuvel Pharmaceuticals 2,000 2,000
Alnylam 6,555 10,000
Mitsubishi Tanab 10,000 –
Disc Medicine – 9,523
National Lottery Community Fund 17,560 –
Alpkit – 500
Portal Therapeutic 8,629 –
The Society for Inborn Errors of Metabolism (SSIEM) 1,679 –
──────── ────────
82,538 34,556
──────── ────────
Other trading activities
Merchandise sales 689 81
──── ────
Investment income
Bank interest receivable 872 360
Dividends receivable – 12
──── ────
872 372
──── ────
Other income
Consultancy fees 1,964 3,645
─────── ───────
──────── ────────
Total income 86,063 38,654
════════ ════════

19

The British Porphyria Association

Detailed Statement of Financial Activities (continued)

Year Ended 31 March 2025

2025 2024
£ £
Expenditure
Costs of other trading activities
Merchandise costs 19 203
════ ════
Expenditure on charitable activities
BPA events 341 10,608
Alfresco Event 10,249 –
BIPNET collaboration event – 2,600
Insurance 1,196 1,141
Trustees' ordinary travel expenses 1,669 1,046
Ordinary travel expenses 3,694 3,150
Accountancy fees 300 264
Storage fees 625 589
Printing, postage, stationery and telephone 3,889 1,726
Newsletter 388 665
Advertising and promotional goods 828 –
Subscriptions 338 389
IT and software 1,835 523
Fundraising 913 775
Sundry costs 219 188
Administration fees 23,776 20,132
Outsourced Work 2,240 –
──────── ────────
52,500 43,796
──────── ────────
Grant funding activities
Grants given 90 163
──── ────
──────── ────────
Expenditure on charitable activities 52,590 43,959
════════ ════════
──────── ────────
Total expenditure 52,609 44,162
════════ ════════
──────── ────────
Net income/(expenditure) 33,454 (5,508)
════════ ════════

20