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2024-03-31-accounts

CHARITY COMMISSION FOR ENGLAND AND WALES Trustees, Annual Report for the period From 1st April 2023 Period start date to 31st March 2024 Period end date Charity name: Amyloidosis UK Charity registration number: 1183624 Objectives and Activities SORP referenee Para Summary of the 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. In planning our aclivities for the year, we kept in mind the Charities obiedives and the Charity Commission's guidance on public benefit. Our objective is.. al providing information, support and advice to people living with the Condition, their families, and carers. bl advocating to ensure that every person has timely and effective diagnosis, treatment, and care of the Condition. cl working closely with all slakeholders to facilitate the availability of effective treatment and care for the Condition. d) supporting research to advance scientific understanding of the Condition and its effective treatment and to publish the useful results thereof for the public benefit. The main aclivilies associated with our objectives were formed based on the guidance issued by the Charity Commission on public benefit. Summary ofthe main activities in relation to those purposes for the public benefit the activities. projects or seNices identified in the accounts. Para 1.17 and 1.19 Statement confimiing whether Ihe trustees have had regard to the guidance issued by the Charity Commission on public benefit Para 1.18 Additional information (optional} You ma choose to include further statements where relevant about: SORP reference NIA Para 1.38 Policy on grant making. NIA Pala 1.38

Policy on social investment including program related investment. All trustees are volunteers. Contribution made by volunteers. Para 1.38 Other Achievements and Performance SORP reference We developed a theory of change, a mission and vision for our organisation to give us clear direction and aims. We developed and launched our first strategy, setting out a clear direction and priorities for the future. We applied for grant funding to cover the cost of delivering the first phase of our strategy. We changed our name and rolled out new branding to increase our recognition and visibilrty and as part of our strategy. This work mean that more patients will be able to find us and seek our support. More patients will be able lo find our websile and get the information they need. As the only Amyloidosis specific charity in the UK, we aim to create a supportive community, increasing our visibility in the community is vital lo us delivering on this aim. We, also.. Summary of the main achievements of the charity, identifying the difference the charity's work has made lo the cilcumslances of its beneficiaries and any wider benefits to society. P#r& 1.20 Represented the patient voice as two new medications passed through the NICE and SMC approval processes. Both medications were approved for use in Scotlland and England. For some groups of patients, this means they have access to disease altering treatments for the first time ever. Attended several professional conferences and events to promote our work and increase awareness ofthe disease.

This benefits patients by increasing awareness among health care professionals. Additional infomiation loptional You ma hoose to include further statements where relevant about.. NIA Achievements against objectives set. Para 1.41 NIA Perfomiance of fundraising activities against objectives set. Para 1.41 NIA Investment performan against objectives 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 reseNes statin are held Number of reseNes held Reasons for holding zero reserves P8ra 1.21 Cash al bank at 311312024 was £22452.23 in unrestricled fvnds. Para 1.22 NIA Pafa 1.22 Para 1.22 NIA NIA

Details of fund materially in deficit Explanation of any uncertainties about the charity continuing as a going concern Para 1.24 NIA Para 1.23 NIA Additional information loptionall 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) Pars 1.47 Investmenl policy and objectives including any social investment policy adopted. As a small charity we do not have this. Para 1.46 NONE A description of the principal risks facing the charity. Para 1.46 Other

Structure, Governance and Management Description of charity's trusts.. Type of governing document How is the charity constituted? Para 1.25 (Foundalion model conslitution) Charitable Incorporated Organisation (CIO) Para 1.25 i.'?raled 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 Irustees Para 1.25 This forms part of the governing document. New trustees are selected by current trustees. Additional inforniation loptionall You ma choose to include further statements where relevant about.. Forms part of the Foundation, model constitution. Policies and procedures adopted for the induction and training of trustees. Para 1.51 We have six trustees and an adminislrator.. Chairman Treasurer Secretary Trustee Trustee Trustee We do riot belon The charity's organisational structure and any wider ne￿Ork with which the chariiy works. Para 1.51 to a wider network. NIA Relationship with any related parties Para 1.51 Other Reference and Administrative details Charit name Other name the charit uses Re istered charil number Charity's principal address Am NIA 1183624 Hackamore House, Grove Lane, Redlyn¢h, Salisbury SP5 2NR. loidosis UK

Names of the charity trustees who manage the charity Trustee name Offieo lif anyl Dates aeted if not for fvll ear Chaiman Treasurer Secretary Trustee Trustee Name of person lor body) entitled toa ornt trustetr ifan Paul Pozzo Vincent Nicholas David Gregory Ruth Bramwell Carlos Heras - Palou Ben Laryea Trustee 10 12 13 14 15 16 17 18 19 20 Cor orate truslees - names of the dIre￿or$ at the date the re Director name ortwasa roved. NIA Name of trustees holding title to property belonging to the charity. Trustee name Dates acted If nol for full ear NIA Funds held as custodian trustees on behalf of others. Description of the 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 charily's objects. NIA Details of arrangements for safe custody and segregation of such assets from the charity's own assets NIA Additional information (optional) Names and addresses of advisers {Optional infomiation> Type of Name Address adviser NIA Name of chief executive or names of senior staff members {Optional infomiation) 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 trustees, report above. Signed on behalf of the charity's trustees Signature(s) Full name(sl Position le.g., Secretaryy Chair, etc) Vincent Nicholas Treasurer Date 28th January 2025

UK ATTR Amyloidosis Patients Association (AKATPA) INCOME SUMMARY YEAR ENDING:

31/03/2024

DATE CUSTOMER £
03/04/2023 Just Giving £9.61
28/04/2023 Charitable Giving £40.00
01/06/2023 Charitable Giving £40.00
14/06/2023 Paypal £196.24
10/07/2023 Donaton £150.00
06/09/2023 Just Giving £29.03
30/10/2023 GKA Insentve £300.00
16/11/2023 Cheques £112.50
02/01/2024 Charitable Giving £57.78
16/01/2024 Paypal £63.00
29/01/2024 Just Giving £24.32
04/03/2024 Just Giving £150.45
04/03/2024 Pfzer £214.00
11/03/2024 Just Giving £82.58
25/03/24 Just Giving £58.46
27/03/24 CG Benevity £5.00

£1,532.97

JUST GIVING 354.45
5
112.5
137.78
150
214
259.24
300
CG Benevity
CHEQUES
CHARITABLE GIVING
Donation
Pfizer
PAYPAL
ONLINE GIVING
GKA INSENTIVE

1532.97

UK ATTR Amyloidosis Patients Association (AKATPA) EXPENDITURE DETAIL YEAR ENDING 31/03/2024

DATE SUPPLIER Total SUBSCRIPTIONS TRAVEL
ACCOMODATION
& SUBSISTENCE
(CONFERENCES)
WAGES,
SALARIES AND
STAFF COSTS		 RENT, RATES,
POWER &
INSURANCE		 DONATIONS ACCOUNTANCY,
LEGAL &
PROFESSIONAL
COSTS		 INTEREST ON
BANK AND
OTHER LOANS		 TELEPHONE,
FAX,
STATIONERY
AND OTHER
OFFICE COSTS		 ADVERTISING/
WEBSITE/
Exhibitons		 BANK, CREDIT
CARD CHARGES		 OTHER
BUSINESS
EXPENSES		 CAPITAL
PURCHASES
(OVER £200)
06/04/2023 Bank Charges 5 5
07/05/2023 Bank Charges 5 5
30/05/2023 Paul Pozzo 760.81 758.56 2.25
06/06/2023 Bank Charges 5 5
14/06/2023 Zurich Charites 96 96
07/07/2023 Bank Charges 5 5
10/07/2023 Kate Taylor 031 322.56 322.56
10/07/2023 Kate Taylor 032 604.8 604.8
10/07/2023 Kate Taylor 033 705.6 705.6
10/07/2023 Kate Taylor 034 221.76 221.76
10/07/2023 Kate Taylor 035 362.88 362.88
10/07/2023 Kate Taylor 036 282.24 282.24
10/07/2023 Kate Taylor 037 786.24 786.24
17/07/2023 David Gregory– NAC Visit Zoom Inv 240.89 166 74.89
24/07/2023 Everso Creatve 614.69 614.69
06/08/2023 Bank Charges 5 5
30/08/2023 Paul Pozzo – Madrid Flight 319.43 319.43
06/09/2023 Bank Charges 5 5
06/10/2023 BSH Services Ltd 1740 1740
07/10/2023 Bank Charges 5 5
07/10/2023 V G Nicholas Eurodis Mem 2023 150.17 85.78 64.39
06/11/2023 Bank Charges 5 5
13/11/2023 Ben Laryca Madrid 23 Exp1 554.06 554.06
13/11/2023 Ben Laryca Madrid 23 Exp2 310.98 310.98
13/11/2023 Paul Pozzo Madrid 1414.69 1414.69
16/11/2012 David GregoryNAC Visit Exp 219.81 159.49 60.32
16/11/2023 Kate Taylor 039 181.44 181.44
16/11/2023 Kate Taylor 040 423.36 423.36
16/11/2023 kate Taylor 041 987.84 987.84
16/11/2023 kate Taylor 038 201.6 201.6
16/11/2023 kate Taylor 042 1149.12 1149.12
27/11/2023 Seth Mowshowitz Inv 28 440 440
30/11/2023 ICO 35 35
07/12/2023 Bank Charges 5 5
14/12/2023 V G Nicholas Alnylam 07/12 63 63
14/12/2023 David GregoryAlnlyam 7/12 132.3 132.3
14/12/2023 V G Nicholas BSHF Conf 189.99 189.99
21/12/2023 Stable Point 5.81 5.81
22/12/2023 SallyWilliams 130 130
06/01/2024 Bank Charges 5.8 5.8
23/01/2024 Seth Mowshowitz Inv 29 800 800
23/01/2024 Kate Taylor Madrid Exp 685.19 583.62 101.57
23/01/2024 Kate Taylor 043 1008 1008
23/01/2024 Kate Taylor 044 967.68 967.68
06/02/2024 Bank Charges 5 5
06/03/2024 David GregoryAlnlyam Meetng 132.3 132.3
06/03/2024 V G Nicholas Alnylam Meetng 64.35 64.35
08/03/2024 Bank Charges 5 5
11/03/2024 Kate Taylor ExpLondon PA 242.04 242.04
20/03/2024 BSH Services Ltd 690 690
18297.43 257.59 5064.09 8205.12 96 165 62.57 4386.26 60.8

UK ATTR Amyloidosis Patients Association (AKATPA) INCOME & EXPENDITURE ACCOUNT YEAR ENDING:

UK ATTR Amyloidosis Patents Associaton (AKATPA)
INCOME & EXPENDITURE ACCOUNT
YEAR ENDING: 31/03/2024
INCOME
SALES 1533
EXPENDITURE
SUBSCRIPTIONS 258
TRAVEL ACCOMODATION & SUBSISTENCE (CONFERENCES) 5064
WAGES, SALARIES AND STAFF COSTS 8205
RENT, RATES, POWER & INSURANCE 96
DONATIONS
ACCOUNTANCY, LEGAL & PROFESSIONAL COSTS 165
INTEREST ON BANK AND OTHER LOANS
TELEPHONE, FAX, STATIONERY AND OTHER OFFICE COSTS 63
ADVERTISING/WEBSITE/Exhibitons 4386
BANK, CREDIT CARD CHARGES 61
OTHER BUSINESS EXPENSES
-18297
PROFIT/LOSS IN YEAR -16764

UK ATTR Amyloidosis Patients Association (AKATPA) BALANCE SHEET ITEMS

CAPITAL PURCHASES (OVER £200)

UK ATTR Amyloidosis Patients Association (AKATPA) YEAR ENDING: 31/03/2024

Opening Balance 39216.69
Purchases 18297.43
Sales/Donatons 1532.97
End Balance 22452.23
Bank Balance as per
bank statement at
31/03/23 22452.23
Diference 7.276E-12