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2025-03-31-accounts

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:

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.

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