CHARITY COMMISSION FOR ENGLAND AND WALES Trustees, Annual Report for the period From 1st April 2024 Period start date to 31$t March 2025 Period end date Charity name: Amyloidosis UK Charity registration number: 1183624 Objectives and Activities SORP referen¢e Para Summary oflhe purposes of the charity as set out in its governing document The purposes of the charity (CIO) are the relief of sickness and the preservation and protection of good health among people in the United Kingdom living with the medical condition Amyloidosis. Summary ofthe main activities in relation lo those purposes for the public benefit the activities. projects or ServI￿S identified in the accounts. Para 1.17and During the reporting period, Amyloidosis UK Carried out a range of activities in furtherance of its charitable purposes and for the public benefit. The charity's main activities focused on improving information, support and representation for people affected by amyloidosis. The charity provided direct support to beneficiaries through an online support group, a website with a moderated forum, and limited one-to-one support, helping to reduce isolation and improve understanding of the condition among patients and carers. The charity also developed and improved ils patient information and communications, ensuring that accurate, accessible information was available to those affected. Last year's rebrand and name change project has significantly increased our visibility and reach, helping us generate substantially more donations to support our work. In addition, the charity undertook advocacy and engagement activity lo represent the interests of people with amyloidosis. This included participation in the UK Amyloidosis Network, contributions to NICE and commissioning consultations relating to treatment access, and collaboration with partner organisations on patient insight work, including the Amylife survey. These activities supported informed decision-making within Ihe health system and aimed to Improve access to appropriate care and treatment. Trustees have had due regard to the Charity Commission's guidance on public benefit and consider that these activities have delivered clear benefit to people affected by amyloidosis and to the wider health stem. Statement confirming whether the trustees have had regard to the guidan issued by the Charity Commission on public benefit Para 1.18 The main activities associated with our objectives were formed based on the guidan￿ issued by the Charity Commission on public benefit. Additlonal infomiation (optional) You ma hoose to include further statements where relevant about.. SORP referenc NIA Para 1 38 Policy on grant making. NIA Para 1.38 Policy on social investment including program related investment. Volunteers, including the charity's Trustees, make a significant contribution to Amyloidosis UK. Trustees volunteer their time lo provide governance and to support day-to-day activity, while other volunteers contribute lived experience, support engagement and awareness-raising, and help infomi consultations and surveys. This voluntary contribution is essential to the charity's ability to operate effectively and deliver public benefit within limited resources. Para 1.38 Contribution made by volunteers. Other Achievements and Performance SORP referenc? Over the reporting period, the charity made significant progress in strengthening both its external influence and internal capacity, resulting in tangible benefits for people affected by amyloidosis and the wider health system. Through representation on the NHS England Selection Panel for the UK Amyloidosis Network, the charity ensured that patient perspectives helped shape national service development, contributing to more coordinated, equitable care pathways. Our policy and advocacy work includinE NICE submissions for Acordamis and Vutrislran and engagement with the NHS Wales Joint Commissioning Committee censultation on Tafamidis has amplified the patient voice in decision-making around access to life.changing treatments. with the potential to improve outcomes and quality of life for current and future patients. Summary of the main achievements of the charity, identifying the difference the chanty's work has made to the circumstances of its beneficiaries and any wider benefits to society. Para 1.20 Awareness-raising remained a priority, with the charity attending the Labour Party Conference to increase understanding of amyloidosis amon8 policymakers, helping to address its Status as a rare and often overlooked condition. Direct sijpport for beneficiaries was strengthened through the launch of an online support group. reducing isolation and providing peer connection and shared understanding for people living with amyloidosis and their families. Alongside this, the charity invested in internal development to ensure sustainability and effectiveness. The development of a communications strategy and webslte improvements have enhanced the clarity, accessibility and reach of information for patients, carers and professionals. Finally, the Amylife survey, delivered in collaboration with the Amyloidosis Alliance, generated valuable patient- reported insights, that we will use to identify unmet needs and inform future service improvemerkt. research priorities and advocacy. Collectively, this work has improved patient support, strengthened system-level decision-making, and contributed to wider societal benefits through better awareness, evidence-informed Fiolicy, and more responsive healthcare for rare disease communities. Additional information (optional) You ma choose lo include further slatements where relevanl about.. NIA Achievements against objectives set. Para 1.41 NIA Performance of fundraising activities against objectives set. Para 1.41 NIA Investment performan¢e against objedives Para 1.41 Other Financial Review Review of the charity's financial position at the end of the eriod statement explaining the policy for holding reserves statin are held Number of reserves held Reasons for holding zero reserves Details of fund materially in deficit Explanation of any uncertainties about the charity ¢ontinuing as a going concem Para 1.21 Cash al bank at 311312025 was £73866.46 in unrestricted funds. Para 1.22 NIA P8ra 1.22 Para 1.22 NIA NIA Para 1 24 NIA Para 1.23 NIA Additional informatlon (optional) You ma choose to include further statements where relevant about.. Our main source of funds this year has been grants and donations. The charity's principal sources of funds (including any fundraising) Para 1.47 As a small charity w8 do not have this. Investment policy and objectives including any social investment policy adopted. Park 1.46 NONE A description of the principal risks facing the charity. Para 1.46 Structure, Governance and Management Description of charity's trusts.. Type of governing document How is the charity constituted? 'nnrated Para 1.25 (Foundation model constitution) Para 1.25 Charitable Incorporated Organisation (CIO) Trustee selection methods including details of any constitutional provisions e.g., election to post or name of any person or body entitled to appoint one or more trustees Para 1.25 This forms part of the governing document. New trustees are selected by ¢urrent trustees. Additlonal information loptionall You ma choose to include further statements where relevant about.. Forms part of the Foundation, model constitution. Policies and pro￿dureS adopted for the induction and training of trustees. Para 1.51 The charity is govemed by a Board of seven Trustees, who hold overall responsibility for slrategy, governance, Complian￿ and financial oversight. Due to the charity s small size, Trustees also take an active role in the day-to-day running of the charity, alongside Iheir governance responsibilities. Operational activity is supported by a freelance charity coordinator, who assists with delivery, administration and communicalions under the direction of the Trustees. The charity's organisational structure and any wider network with which the charity works. Para 1.51 The charity works closely with a range of external p'arthers. to maximise its impact. These include NHS England, through involvement in the UK Amyloidosis Nelwork, NICE and devolved nation commissioning bodies, specialist clinicians and trealment centres, and other patient and rare disease organisations, including the Amyloidosis Alliance. The charity also engages with policy stakeholders and supports peer connection through its online support group, ensuring that beneficiary vol￿S inform decision-making and Servi￿ development. NIA Relationship with any related parties Para 1.51 Other Reference and Administrative details Charit name Other name the chari uses istered charit number Charity's principal address loidosis UK NIA 1183624 Office 7, First Floor, No 11 Riverside Industrial Park Farnham GU9 7UG Names of the charity trustees who manage the charity Dates acted If not for tull Offhce lif any) ear Name of pèrson lor body) entitled toa oint trusteo If an Trusts¥ name Paul Pozzo Vincent Nicholas David Gregory Ruth Bramwell Carlos Heras - Palou Ben Laryea Julian Macleod Chairman Treasurer Secretary Trustee Trustee Trustee Trustee 10 12 13 14 15 16 17 18 19 20 Cor orate trustees - names of the directors at the date the re Dlre¢tor name ortwasa roved. NIA Name of trustees holding title to property belonging to the charity. Dates a¢ted Sf not for tull aar Trustee name NIA Funds held as custodian trustees on behalf of others. Description of Ihe assets held in this capacity. NIA Name and objects of the charity on whose behalf the assets are held and how these falls within the custodian charity's objects. NIA Details of arrangements for safe custody and segregation of such assets from the charily's own assets NIA Additional information (optional) Names and addresses of advisers (Optional infomiationl Type of Name Address adviser NIA Name of chief executive or names of senior staff members (Optional information) Exemptions from disclosure Reason for non-disclosure of ke ersonnel details NIA Other o tional information Declarations The trustees declare that they have approved the trustses, report above. Signed on behalf of the charity's trustees Signaturels) Full namels) Position1o.g*• Secretary, Chair. etc) Vincent Nicholas Treasurer Date 28th January 2026 ## Amyloidosis UK **INCOME SUMMARY YEAR ENDING:** ## 31/03/2025 |**DATE**|**CUSTOMER**|**£**| |---|---|---| |02/04/2024|Paypal|£57.06| |05/04/2024|LH Perspective|£200.00| |23/04/2024|Donation|£1,000.00| |29/04/2024|Just Giving|£33.73| |20/04/2024|Eidos Therapeutics|£14,988.00| |28/05/2024|Just Giving|£731.63| |03/06/2024|Just Giving|£561.79| |25/06/2024|Unum European Hold|£30.00| |25/06/2024|Astrazenecha|£15,000.00| |01/07/2024|Just Giving|£43.56| |08/07/2024|Just Giving|£63.56| |10/07/2024|Paypal|£359.25| |29/07/2024|Just Giving|£4.70| |02/08/2024|Intellia Therapeutic|£17,600.00| |03/09/24|Just Giving|£4.70| |13/09/24|Donation|£68.55| |01/10/24|Just Giving|£33.73| |02/10/24|CG Benevity|£100.00| |09/10/24|Donation|£90.00| |15/10/24|Much Loved|£98.84| |21/10/24|Just Giving|£90.14| |04/11/24|Just Giving|£273.48| |15/11/24|Much Loved|£555.08| |26/11/24|Just Giving|£900.41| |02/12/24|Paypal|£185.08| |05/12/24|Alnylam UK|£15,000.00| |11/12/24|Just Giving|£4,938.43| |16/12/24|Much Loved|£500.97| |16/12/24|Just Giving|£115.61| |23/12/24|Just Giving|£204.80| |30/12/24|CG Benevity|£310.00| |06/01/25|Donatis|£18.74| |07/01/25|Just Giving|£10,400.92| |15/01/25|Much Loved|£1,589.31| |20/01/25|Just Giving|£77.57| |22/01/25|Donation|£100.00| |27/01/25|Just Giving|£302.90| |04/02/25|Donation|£162.87| |11/02/25|Donation|£195.00| |17/02/25|Much Loved|£793.14| |17/02/25|Just Giving|£1,172.77| |20/02/25|Just Giving|£180.58| |24/02/25|MemoryGiving|£207.01| |25/02/25|Donatis|£141.45| |25/02/25|MemoryGiving|£47.04| |03/03/25|Just Giving|£1,179.39| |06/03/25|Exafield|£40.00| |10/03/25|Just Giving|£812.78| |---|---|---| |12/03/25|Eidos Therapeutics|£7,500.00| |13/03/25|MemoryGiving|£75.27| |14/03/25|Astrazenecha|£400.00| |14/03/25|Much Loved|£315.70| |17/03/25|Just Giving|£1,149.52| |24/03/25|Just Giving|£581.67| |25/03/25|CAF|£200.00| |28/03/25|Belvedere Trust|£3,000.00| |31/03/25|Paypal|£343.78| |31/03/25|Just Giving|£97.20| |||| |||| |||| |||| |||| |||| |||| |||**£105,227.71**| Top income streams |JUST GIVING|23955.57| |---|---| |Eidos Therapeutics|22488| |Intellia Therapeutic|17600| |Astrazenecha|15400| |Alnylam UK|15000| |Much Loved|3853.04| |Belvedere Trust|3000| |Donation|1616.42| |PAYPAL|945.17| |CG Benevity|410| |MemoryGiving|329.32| |CAF|200| |LH Perspective|200| |Donatis|160.19| |Exafield|40| |Unum European Hold|30| ||| ||| 105227.7 / Amyloidosis UK ## **EXPENDITURE DETAIL** **YEAR ENDING:** 31/03/2025 |DATE|SUPPLIER|Details|Total|SUBSCRIPTIONS|TRAVEL
ACCOMODATION
& SUBSISTENCE
(CONFERENCES)|
WAGES,
SALARIES AND
STAFF COSTS|RENT, RATES,
POWER &
INSURANCE|ENTERTAINMENT|CONSULTANCY|ACCOUNTANCY,
LEGAL &
PROFESSIONAL
COSTS|PAYMENT FOR
TRIALS|TELEPHONE,
FAX,
STATIONERY
AND OTHER
OFFICE COSTS|ADVERTISING/
WEBSITE/Exhibi
tions|BANK, CREDIT
CARD CHARGES|OTHER
BUSINESS
EXPENSES|CAPITAL
PURCHASES
(OVER £200)| |---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---| |||||||||||||||||| |05/04/2024|Seth Mowshowitz|30|121.5||||||||||121.5|||| |05/04/2024|Seth Mowshowitz|31|120||||||||||120|||| |06/04/2024|Bank Charges||5|||||||||||5||| |16/04/2024|Paul Pozzo|BHF|477.53||363.53||||||||114|||| |16/04/2024|Seth Mowshowitz|32|333.81||||||||||333.81|||| |16/04/2024|Seth Mowshowitz|33|226.38||||||||||226.38|||| |16/04/2024|Seth Mowshowitz|34|310||||||||||310|||| |23/04/2024|Mr C Heras-Palou|Madrid|725.65||725.65|||||||||||| |01/05/2024|Another Planet|1904613|619.95||||||||||619.95|||| |01/05/2024|Kate Taylor|45|1483.2|||1483.2||||||||||| |01/05/2024|Kate Taylor|46|1580.4|||1580.4||||||||||| |01/05/2024|Kate Taylor|47|1306|||1306||||||||||| |01/05/2024|Kate Taylor|48|686.44|||686.44||||||||||| |07/05/2024|Bank Charges||5|||||||||||5||| |08/05/2024|Paul Pozzo|BSH|448.94||409.45|||||||39.49||||| |20/05/2024|RBC||6|||||||||||6||| |24/05/2024|Ben Laryea|BSH|99.92||99.92|||||||||||| |24/05/2024|David Gregory|Alnylam|146.78||146.78|||||||||||| |24/05/2024|Seth Mowshowitz|35|300||||||||||300|||| |24/05/2024|VG Nichols|Alnylam|64.35||64.35|||||||||||| |06/06/2024|Bank Charges||5|||||||||||5||| |13/06/2024|Paul Pozzo|Alnylam|70.24||60.3|||||||9.94||||| |26/06/2024|Balbir Bains|intellia|150||||||||150||||0|| |26/06/2024|Paul Pozzo|Intellia|150||||||||150|||||| |26/06/2024|Peter Lusby|intellia|150||||||||150|||||| |26/06/2024|Ruane|intellia|150||||||||150|||||| |08/07/2024|Bank Charges||5|||||||||||5||| |10/07/2024|Zurich||9.6||||9.6|||||||||| |19/07/2024|Paul Pozzo|Lab Conf Hotel|1311.7
||1311.7|||||||||||| |26/07/2024|Another Planet|1904669|2655.63||||||||||2655.63|||| |29/07/2024|Seth Mowshowitz|36|350||||||||||350|||| |02/08/2024|RBC||6|||||||||||6||| |06/08/2024|Bank Charges||5|||||||||||5||| |06/08/2024|Kate Taylor|51|1290.24|||1290.24||||||||||| |06/08/2024|Kate Taylor|50|1169.28|||1169.28||||||||||| |06/08/2024|Kate Taylor|49|1612.8|||1612.8||||||||||| |12/08/2024|David Gregory|Zoom|178|178||||||||||||| |12/08/2024|Zurich||9.6||||9.6|||||||||| |21/08/2024|R & N Kent|2504|775||||775|||||||||| |06/09/2024|Bank Charges||5|||||||||||5||| |06/09/2024|Thirusha Lane|001|585||||||585|||||||| |10/09/2024|Zurich||9.6||||9.6|||||||||| |18/09/2024|Kate Taylor|51|1008|||1008||||||||||| |18/09/2024|Kate Taylor|Laptop|1404.7|76.7||||||||||||1328| |25/09/2024|Seth Mowshowitz|37|115.51||||||||||115.51|||| |29/09/2024|Everso|13709|159.6||||||||||159.6|||| |01/10/2024|R & N Kent|2552|275||||275|||||||||| |03/10/2024|Seth Mowshowitz|38|140.52||||||||||140.52|||| |07/10/2024|Bank Charges||5|||||||||||5||| |---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---| |10/10/2024|Zurich||9.6||||9.6|||||||||| |11/10/2024|Seth Mowshowitz|39|640||||||||||640|||| |15/10/2024|Thirusha Lane|002|540||||||540|||||||| |26/10/2024|Kate Taylor|53|1229.76|||1229.76||||||||||| |26/10/2024|Paul Pozzo|Lab Conf|796.19||||||||||||796.19|| |29/10/2024|David Gregory|NAC|433.87||433.87|||||||||||| |29/10/2024|R & N Kent|2573|275||||275|||||||||| |05/11/2024|BSH|AM2024012|1740||||||||||1740|||| |05/11/2024|BSH|BSHQ2024026|1663.44||||||||||1663.44|||| |05/11/2024|VG Nichols|NAC|129.92||129.92|||||||||||| |06/11/2024|Bank Charges||5.8|||||||||||5.8||| |13/11/2024|Zurich||9.6||||9.6|||||||||| |15/11/2024|Thirusha Lane|003|720||||||720|||||||| |29/11/2024|ICO||35|||||||35||||||| |02/12/2024|R & N Kent|2594|275||||275|||||||||| |02/12/2024|Seth Mowshowitz||1160||||||||||1160|||| |07/12/2024|Bank Charges||5|||||||||||5||| |10/12/2024|Zurich||9.6||||9.6|||||||||| |13/12/2024|Kate Taylor|54|1693.44|||1693.44||||||||||| |13/12/2024|Kate Taylor|55|1451.52|||1451.52||||||||||| |13/12/2024|Medipace|0075|2644.5||||||||||2644.5|||| |13/12/2024|Thirusha Lane|004|1064||||||1064|||||||| |02/01/2025|Paul Pozzo|BSH/NAC|333.63||333.63|||||||||||| |02/01/2025|R & N Kent|2616|275||||275|||||||||| |06/01/2025|Bank Charges||5|||||||||||5||| |10/01/2025|Zurich||9.6||||9.6|||||||||| |17/01/2025|Kate Taylor|56|846|||846||||||||||| |17/01/2025|Thirusha Lane|Dec|700||||||700|||||||| |30/01/2025|SallyWilliams|42|150|||||||150||||||| |03/02/2025|Astraea HR|1253|432|||||||432||||||| |03/02/2025|R & N Kent|2634|275||||275|||||||||| |06/02/2025|Bank Charges||5|||||||||||5||| |09/02/2025|Et Al|006|1064||||||1064|||||||| |09/02/2025|Kate Taylor|57|936|||936||||||||||| |09/02/2025|Seth Mowshowitz|44|500||||||||||500|||| |09/02/2025|Zesty|281|4315.2||||||||||4315.2|||| |10/02/2025|Zurich||9.6||||9.6|||||||||| |25/02/2025|Just Giving|Subs|18|18||||||||||||| |03/03/2025|Kate Taylor|Exp|124.59||124.59|||||||||||| |03/03/2025|R & N Kent|2652|275||||275|||||||||| |07/03/2025|BSH Services|25-06|690||||||||||690|||| |07/03/2025|Kate Taylor|58|1608|||1608||||||||||| |07/03/2025|Seth Mowshowitz|48|420||||||||||420|||| |07/03/2025|VG Nichols|Farnham meet|479.6|||||479.6||||||||| |09/03/2025|Bank Charges||6.2|||||||||||6.2||| |10/03/2025|Zurich||9.6||||9.6|||||||||| |12/03/2025|David Gregory|Farnham meet|286.3||286.3|||||||||||| |12/03/2025|RBC||6|||||||||||6||| |18/03/2025|Et Al|007|588||||||588|||||||| |25/03/2025|Just Giving||18|18||||||||||||| |28/03/2025|Ben Laryea|Farnham meet|23||23|||||||||||| |28/03/2025|Noelyn Mae|Exp|46.05||46.05|||||||||||| ||||0|||||||||||||| ||||0|||||||||||||| |53813.48||||290.7|4559.04|17901.08|2511.4|479.6|5261|617|600|49.43|19340.04|80|796.19|1328| ## **Amyloidosis UK INCOME & EXPENDITURE ACCOUNT YEAR ENDING:** |**Amyloidosis UK**
**INCOME & EXPENDITURE ACCOUNT**||| |---|---|---| |**YEAR ENDING:**|31/03/2025|| |**INCOME**||| |SALES||105,228| |**EXPENDITURE**||| |SUBSCRIPTIONS|291|| |TRAVEL ACCOMODATION & SUBSISTENCE (CONFERENCES)|4,559|| |WAGES, SALARIES AND STAFF COSTS|17,901|| |RENT, RATES, POWER & INSURANCE|2,511|| |ENTERTAINMENT|480|| |CONSULTANCY|5,261|| |ACCOUNTANCY, LEGAL & PROFESSIONAL COSTS|617|| |PAYMENT FOR TRIALS|600|| |TELEPHONE, FAX, STATIONERY AND OTHER OFFICE COSTS|49|| |ADVERTISING/WEBSITE/Exhibitions|19,340|| |BANK, CREDIT CARD CHARGES|80|| |OTHER BUSINESS EXPENSES|796|| |||-52,485| |PROFIT/LOSS IN YEAR||52,742| |**Amyloidosis UK**|| |---|---| |**BALANCE SHEET ITEMS**|| |CAPITAL PURCHASES (OVER £200)|1,328| Amyloidosis UK **YEAR ENDING:** 31/03/2025 |Opening Balance|22452.23| |---|---| |Purchases|53813.48| |Sales/Donations|105227.7| |End Balance|73866.46| |Bank Balance as per|| |bank statement at|| |31/03/25|73866.46| Difference 0 ## **Independent examiner's report on the accounts** ## **Section A Independent Examiner’s Report** **Report to the trustees** Charity Name AMYLOIDOSIS UK **On accounts for the year** 31/03/25 **Charity no** 1183624 **ended (if any) Set out on pages** (remember to include the page numbers of additional sheets) I report to the trustees on my examination of the accounts of the above charity (“the Trust”) for the year ended **31/03/2025** ## **Responsibilities and basis of report** - . As the charity's trustees, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011 (“the Act”). I report in respect of my examination of the Trust’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** I have completed my examination. I confirm that no material matters have **statement** come to my attention in connection with the examination (other than that disclosed below *) which gives me cause to believe that in, any material respect: - the accounting records were not kept in accordance with section 130 of the Charities Act; or - the accounts did not accord with the accounting records; or - 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 accounts to be reached. * _Please delete the words in the brackets if they do not apply._ |**Signed:**
**Name:**
**Relevant professional**
**qualification(s) or body**
**(if any):**|Sally Williams|18
/01/2026| |---|---|---| |||| ||SALLY WILLIAMS|| |||| |||| 1 **Oct 2018** **IER** **Address:** 11 THE FAIRWAY, FARNHAM, GU9 9BB ## **Section B Disclosure** Only complete if the examiner needs to highlight material matters of concern (see CC32, Independent examination of charity accounts: directions and guidance for examiners). **Give here brief details of any items that the examiner wishes to disclose** . 2 **Oct 2018** **IER**