Charity Registration Number: 1089609 The British Porphyria Association Financial Statements For the Year Ending 31 March 2024 JANE ASCROFT ACCOUNTANCY LIMITED Chartered Accountants Enterprise House Harmire Enterprise Park Bamard Castle County Durham DL12 8XT The British Porphyria Association Flnancial Statements Year Ended 31 Aqarch 2024 Page Trustees, Annual Report Independent Examinerfs Report to the Trustees ststement of Financial Actsvit Statement of Financial Position Notes to the Financial StaterrEnts 10 Tho Followlng Pages Do Not Form Part of the Flnancial Statwnents Detailed stste￿nt of Financial Activities 18 The British Porphyria Association Trustets. Annual Report Year Ended 31 March 2024 The trustees Fyesent their report and the unaudited financial statements of the charity for the year ended 31 March 2024. 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 professlon and the general public into Porphyrfa and its implications for the family. b} The promotion of research into the causes, effects, treatrnent and management of Porphyria and to disseminate the useful resuts thereof. vl nd The 202&2024 financial year has agaln been very busy for the BPA continued to work towards our alms to advocate for, support and educate porphyria patients, as well as relatlves and medical professlonals, so as to Improve the quality of1Sfe for those living wlth the dlfferent types of porphyria. We contlnued to promote awareness and the advancement of research Into new thorapies. We exparKled our themes of support by adding SHARE lo our theff￿$ of CONNECT, UNDERSTAND and TAKE CONTROL. PORPHYRIA AWARENESS Commencing on 19 April 2023, Global Porphyfia Day (GPD), previously known as Porphyrfa Awareness Week, provided the opportunity to ralse awareness about porphyria as well as opportunities for pati8nts and their framilies and frlends to get involved in the theme of Thls Is My Porphyria. The day produced great engagement across many countries. The British Porphyria Association Trusts•8' Annual Report (conllnued) Year Ended 31 March 2024 CONFERENCES AND EVENTS In June 2023, we were pleased to hold a fa￿-to-faCe patient conference at the SnowDome Conference Facility in Tamworth. The event began with a quiz and social evening on the Saturday giving families the opportunity to connect informally. The feedback was overwhelmingly positlV8 and enjoyed by all in attendance. The Sunday brought together some excellent patient stories followed by research updates and Q&A sesstons wlth UK porphyria experts. A handful of the BPA team presented and took part In the BIPNET (British & Irish Porphyria Nelwork - a clinician-led best practice netsvork) Annual Conference the followlng day. The joint collaboration between BIPNET and the BPA is a great opportunity for reciprocal knowledge sharing and education. We had planned a two48y residential event Sn September 2023 however, due to unforeseen circumstances, the event ¥vas postponed until October 2024. Our AGM was held virtually in October 2023, so we took the opportunlty to hokl an onllne 80clal gatherlng where people could connect with others with their type of porphyria, and gain more Input from our community on what young people would value on the postponed residential activity. During the AGM Iwo attendees volunteered thelr seriices as trustees, Dr Vid(y M¢Gulre, who is also a BPA patron and VSctoria Harold, one of our committee members. They were both duly appoSnted trustee8 on 29 November 2023. We returned to Dublin on Sunday 3 March 2024 for a much-needed Patient Day in Ireland. The event was organised wlth the support of St James's Hospltal, Dublin and the BIPNET tsam. The programme included doctor and patient talks. research updates from phamaceutical companies, and Q&A sessions, and was attended by patients, their familles and friends, and medical professlonals. The patient day was agaln followed by the BIPNET Annual Conference, where the BPA took an actlve role in Gollaboratlng with medlcal professionals and lab staff to enhance the porphyria knowledge base. In March 2024, we also held our first onllne Peer Support Group Drop-ln Sesslon to support patlents with EPPfXLP and other skln porphyrias. The sesslon was open to all ages, and families affected were encouraged to attend together. This is a new programme of support that aims to help people living with porphyria to understand their conditlon, connect with others and bulld the confidence to lake control and share their story. BPA TEAM We were delighted thal In March 2024, Clalre Jarvls, who had been volunteerfng for the BPA during the financlal year, agreed to become our new Treasurer and a Trustee. Claire was appointed a trustee on 19 March 2024. WEBSITE, SOCIAL MEDIA & HELPLINES fjAth the continuing support of the 8PA's paid admlnistrator. the BPA have made great strldes thls year in engaging a larger audience on social media, where content Interaction saw a 56% increase on the prior year and our reach increased by 20%. Our net followers increased by 97 (an increase of 530h} in the 2023-2024 year. Twice yearly newsletters were produced and sent out to our members and merchandlse VAS purchased for fundraislng and awareness. BPA funds were used for administration fees, printing and postage. A Christmas fundralsing campaign was held again in 2023, selling Christmas cards and baubles. ADVOCACY We continued to take an active part In appraisals of new treatrnents for porphyria and maintsin our Invo￿ement with researchers and companies exploring potential treatments to ensure the The British Porphyria Association Trustees. Annual Report {eondnued) Year Ended 31 Iblarch 2024 patient voice is considered at the earty stages of research, and that the impact of the condition on patients is considered throughout the process. The BPA has been well-represented internationally through LE Gill's role as the patient representstive on the Executive Board of Ipnet (International Porphyria Network - a global clinician-led network). As well as being one of the BPA'S strategic leads, Liz is also heavily involved in the Ipnet Acute Clinical Guidelines project, which aims to develop evidence-based guidelines for the care of acute porphyria patients around the world. Holdlng an Instrumental role, Sue Burrell is the Global Porphyria Advocacy Coalition {GPAC) President, as well as one of the BPA'S strategic leads. She works with other patient organisations and pharmaceutical companies to raise awareness of the porphyrias and develop resources for patients, as well as ensuring that the BPA is at the forefront of colLqboratlons with new drug development research. Grant Maklng It Is the policy of the charity to give assistsnce to sufferers of porphyrla to help towards thelr medical and physical requlrements. Funds are made available to asslst our members to attend our events with £50 towards travel and £50 towards an ovemlght stay. Monles In the Helen Glbbs Fund wlll continue to be allocated to acute porphyrfa patlents who are eligible to recelve the new treatment Givlaari, but who are unable to cover the cost of travelling to a porphyrfa centre to be able to recelve thls Ilfe changlng treatment. These patients will need to vlslt a porphyrla centre once a month for the flrst slx months to receive the treatment and for ongolng monitorlng and data collection. After the first Six months, patlents wlll receive thelr treatment at home, We expect there to be a handful of new patlents each year that need this support for the first six months of treatment. The British Porphyria Association Trustees. Annual Report (contlnued) Year Ended 31 March 2024 Flnanclal Revlew The BPA funds at 31 March 2024 consist of general funds of £15,557 and restricted fijnds totalling £19,171: £17.038 in the Helen Gibbs fund for research into acute porphyria, £920 in the Light Protection Fund reserled for grants to EPP patients and £1,213 in the Festival 2019 fund. Our reserves policy is to hold sufficient funds to fund VK)rking capital and, as the charity is growlng, 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 donattons the reserves will be used lo cover any shortfalls in income or changes in circumstances. Fundlng BPA income derives from donations, fundraising and sponsored events, mercharKllse 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. Our corporate supporters, Alnylam PhaMia￿utlCals, Disc Medicine, Mitsubishi Tanabe Phamia Company, Clinuvel UK, and Alpkit Foundats'on helped to support our events and attendan￿ of key BPA pensonnel. Their sustained assistance enables us to continue helping and supporting porphyria patients and their framilies through valued BPA events and opportunities to gain further knowledge. During the 2024-2025 finanaal year. we viill be seeking fvnding to enable us to focus on, strengthen and protect our core organisational resilience as part of a development projecL The British Porphyria Association Trustees. Annual Report (contlnu8dJ Year Ended 31 March 2024 Future Develo ments In 2024 we are updating our two-year strategic plan. In addition to the day-to-day running of the charity and to fulfil our overarching advocacy principles of support, education and research, through our themes of Understand, Connec( Take Control and Share. some of the things we would like to achieve in the coming year are: Continue to provide a focus on the mental health of people living with porphyria. Host a iwo4lay Residential Event in October at Thorpe Woodlands Adventure Centre, Thetford ForesL The event is designed to offer a safe residential environment with numerous outdoor activities for children and young people affected by Erythropoietic protoporphyria (EPP}. We will also be arranging for famity members to meet with other parentslsiblings to build our EPP support community further. We plan to send representatives to the Intemational Congress on Porphyrins and Porphyria {ICPP) in Pamplona, Spain on 21-25 September 2024. As always, we will be actively engaged (alongside cllnicians, researchers, scholars, patients and their families) over a number of days to build further connections and learn about the latest research and developments in the field of porphyria. Develop our resilience as an organisation by making plans to update technology and processes, as well as consider succession planning to ensure that we remain strong as an organisation and able to deliver vital services. Continue with legacy video-editing work from the Festival in 2019 and Reconnect Dundee in 2022 to make presentations available to enhance knowledge and understanding of porphyria. These are available online to patients, relatives and medical professionals working with porphyria patients. Facilitate further online Peer Support Drop-in Sessions during 2024. Hold our AGM virtually in Autumn 2024 followed by a social event. As a￿aYs, we continue to encourage and support research Snto findlng better treatments for all the porphyrias, and maintsin and foster nehvorks in the UK, Europe and globally. Govomanc ement Govemlng document The charity is govemed by a constitution which is available from the trustees and represents an unincorporated charity. Rlsk management The trustees have a duty to identfy and review the risks to which the charlty Is exposed and to ensure appropriate controls are in place to provide reasonable assurance against fraud and error. Re4ppolntment of trustees The trustees hold office for three years with no mre than one third retiring at the annual general meeting. Subject to eligibility those retiring may be re-elected or re-appointed. The British Porphyria Association Trustses. Annual Report (¢onthu Year Ended 31 March 2024 R•ference and Admlnlstra Reglstered charity name Brilish Porphyria Association Charlty reglstratlon number 1089609 Prlnclpal offlce 136 Devonshire Road Durham Cty County Durham DH12BL The Trustees A Newton ffreasurer) J W Chamberlayne KEHarris A Molyneux R Bennett N Chadwick V Harrold V McGuire C Jarvis Independent Examlner Jane Ascroft FCA MA (Cantab) Enterprise House Hamiire Enterprise Park County Durham DL12 8XT The trustees, annual report was approved on .....t2June.202A and signed on behalf of the board of trustees by: J W Chamberfayne Trustee The British Porphyria Association Independent Examlnerfs Report to the Trustses of The Brftlsh Porphyrla Association Year Ended 31 March 2024 I report to the trustees on my examination of the financial statements of The British Porphyria Association ('the charty,) for the year ended 31 March 2024. Responslbilitles and Basis of Report As the trustees of the charity you are responsible for the preparation of the financial statements in accordan￿ with the requirements of the Charities Act 2011 ('the Acy). I report in respect of my examination of the charity's financial Stste￿￿nt$ carried out under section 145 of the 2011 Act and in carying out my examination I have followed all the appSicable Directions given by the Charity Commission under section 145(5){b) of the Act. Independent Examlnerfs Statement I have completed my 8xamlnatlon. I confim that no material matters have come to my attention in connection with the examination giving me cause to believe that In any material respect: accounting records were not kept in respect of the charlty as required by section 130 of the Act; or the financial statements do not accord with those records., or the financial statements do not comply wrth the applicable requirements conceming the fonn 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 fai¢ view which is not a matter considered as part of an independent examination. I have no concems 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. dAkn r--Qe . Jane Ascroft FCA MA (Cantab) Independent Examiner Enterprise House Harmire Enterprise Park Bamard Castle County Durham DL12 8XT The British Porphyria Association Statsment of Financial Aetlvltl•s Year Ended 31 March 2024 2024 Restricted funds Total funds Total funds 2023 Unrestricted funds Income and endOVffl￿nts Donations Other trading activities Investment income other income 34.056 81 144 3.645 37,926 500 34,556 81 372 3,645 38.654 40,722 228 96 2,223 43,549 Total Income 728 Expenditure Expenditure on raising funds: Costs of other trdding aclivities Expenditure on charitable activitses Total expenditure 203 43.796 203 43,959 44.162 345 47,787 48,132 9.10 163 43,999 163 Not oxpenditure and movement In funds (6,073) 565 (5,508) (4,583) Reconciliatlon of funds Total funds brought forward Total funds carrfed forward 20.274 14.201 19,107 19,672 39,381 33,873 43.964 39,381 The statemnt of financial activities includes all gains and losses recognised in the year. All income and expendibjre derive from continuing activitses. The notes on pages 10 to 16 fomi part of these financlal statements. The British Porphyria Association Statement of Flnancial Poslllon 31 March 2024 2024 2023 Note Current Assets Debtors Cash at bank and in hand 15 108 39,573 39,681 34,727 34,727 Credttors: amounts falllng due wfthln ono year Not Current Assets 16 854 300 33,873 33,873 39.381 Total A889ts L•s8 Currnnt Llabllftle8 39,381 Net A888ts 33,873 39,381 Fund8 of th• Charlty Restricted funds Unrestrlcted funds 19,672 14,201 19,107 20,274 39,381 Total charlty funds 18 33.873 These flnanclal statements were approved by the board of trustees and authorlsed for Issue on I￿.7￿..1¢￿and are slgned on behalf of the board by: A Newton {Tre8surer) Trustee The notos on pages 10 to 16 form part of these flnancial statsments. The British Porphyria Association Notes to the Flnanclal Statements Year Endod 31 March 2024 General Inlomiatlon The charty is a public benefit entity and a registered charlty in England and Wales and is unincorporated. The address of the principal office is 136 Devonshlre Road, Durham City, County Durham, DH128L. ststement of Compllance These flnanclal statsments have been prepared in compllance with FRS 102, The Financial Reportlng Standard appllcable In the UK and the Republic of Ireland,, the Statement of Recommended Practice applicable to charities preparing thelr accounts in accordance with the Financial Reporting Stsndard applicable In the UK and Republic of Ireland (FRS 102) (Charities SORP {FRS 102)) and the Charitles Act 2011. Accountlng Pollcle8 Basls of Proparatlon The financlal ststements have been prepared on the hlstorical cost basls, as modlfied by the revaluation of certain financial assets and Ilabllltles and Investment properties measured at falr value through Inc￿Me or expendlture. The financial statements are prepared in sterling, which is the functional currency of the entity. Golng Concern There are no material Ul￿ertaIntieS about the charlty's ablllty to continue. Judgements and Key Sources of E8tlmatlon Uncertalnty The preparatlon of the financlal statements requlres management to make Judgements, estlmates and assumptlons that affect the amounts reported. These estimates and judgements are continually revlewed and are based on experience and other tsctors, including expectations of fvture events that are believed to be reasonable under the circumstances. The Trustees consider that there are no 8ignlficant estimates or judgements affecting these financlal ststements. Fund Accountlng Unrestrlcted funds are avallable for use al the dlscretlon of the twstees to further any of the charity's purposes. Designated funds are unrestrlcted ￿ndS earmarked by the trustees for partlcular future project or commltment. Restricted funds are subjected to restrictions on thelr expendlture declared by the donor or through the terms of an appeal, and fall into one of two sub 9,500 884 (9,500) {884) {10,733) 19,419 10,426 (s} 19,107 The Helen Glbbs fund 18 for research Into acute porphyria and the Llght Protectlon Fund Is reserved for grants to EPP patlents. The Festival 2019 fund Includes a grant from Orphan Europe to help towards our Porphyria Festival in October 2019 to celebrate our 20th anniversary. 19. Analy818 of Nèt A888ts Betsvoen Funds Unrestricted Restrkted Total Fund8 Funds Funds 2024 Current assets Creditors less than 1 year Net a88Ots 15,055 (854) 14,201 19,672 34,727 (854) 33,873 19,672 Unrestrlcted Funds Restrfcted Total Funds Funds 2023 Current assets Creditors less than 1 year Not a680t8 21,458 (300) 21,158 18,223 39,681 (300) 39,381 18,223 16 The British Porphyria Association Management Infomiatlon Year Ended 31 March 2024 Th• Followlng Pages Do Not Fomi Part of the Flnanclal statements. 17 The British Porphyria Association Detalled Statement of Financial Actlvltles Year Ended 31 March 2024 2024 2023 Income and endovmients Donatlons Donations and subscriptions Gift aid Other income Clinuvel Phamiaceuticals grant Alnylam grant Mitsubishi Tanab Disc Medicine National Lottery Community Fund Alpkit 10,982 1,069 482 2,000 10,000 16,438 1,400 10,000 2,500 9.523 9,500 500 34,556 40.722 Other tradlng actlvltles Merchandlse sales 81 508 Investment Incomo Bank Inte￿$t receivable Dividends receivable 360 12 82 14 372 Other Income Consultsncy fees 3,645 2,223 Total Income 38,654 43,549 18 The British Porphyria Association Detalled Statement of Financial Actlvltles (contlnuod) Year Ended 31 March 2024 2024 2023 Expendfture Costs of other tradlng activities Merchandise costs 203 345 Expgndlture on charftable actlvltles Actlvltles undertaken dlrectly BPA events Counselling & wellbeing BIPNET collaboration event Insurance Intemational conference fees Trustees, ordinary travel expenses Ordinary travel expenses Accountancy fees Storage fees Printing, postage, stationery and telephone Newsletter Advertising and promotional goods Subscriptions IT and software Fundraising Sundry costs Administration fees Administration fees - Festival 10.608 10.935 230 2.600 1,141 1,068 1.231 2,682 4,152 300 3,150 264 589 1,726 665 1,244 550 586 346 519 684 389 523 775 188 20,132 19,804 2,223 43,796 47.138 Grant fundlng activides Grants gNen 163 649 Expènditure on charltable activities 43.959 47,787 Total expendlture 44,162 48,132 Net expenditure (5,508) (4,583) 19