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|
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£1,532.97

|JUST GIVING|354.45<br>5<br>112.5<br>137.78<br>150<br>214<br>259.24<br>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<br>ACCOMODATION<br>& SUBSISTENCE<br>(CONFERENCES)|<br>WAGES,<br>SALARIES AND<br>STAFF COSTS|RENT, RATES,<br>POWER &<br>INSURANCE|DONATIONS|ACCOUNTANCY,<br>LEGAL &<br>PROFESSIONAL<br>COSTS|INTEREST ON<br>BANK AND<br>OTHER LOANS|TELEPHONE,<br>FAX,<br>STATIONERY<br>AND OTHER<br>OFFICE COSTS|ADVERTISING/<br>WEBSITE/<br>Exhibitons|BANK, CREDIT<br>CARD CHARGES|OTHER<br>BUSINESS<br>EXPENSES|CAPITAL<br>PURCHASES<br>(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||||
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||||||||||||||||
|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)**<br>**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|