CHARITY COMMISSION FOR ENGLAND AND WALES Trustees, Annual Report for the period From 1st April 2020 Period stsrt date to 31st March 2021 Period end date Charity name: UK ATTR Amyloidosis Patients, Association (UKATPA) Charity registration number: 1183624 Objectives and Activities SORP reference Para Summary of the purposes of the charity as set out in its 90verning 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 AThR Amyloidosis. Summary of the main activities in relation to those purposes for the public benefit the activities, projects or services identified in the accounts. Para 1.17and 1.19 In planning our activities for the year, we kept in mind the Charities objeclives and the Charity Commission's guidance on public benefit. Our objective is.. a} providing information, support and advice to people living wilh the Condition, their families, and carers. bl advocating to ensure that every person has timely and effective diagnosis, treatment, and care of the Condition. c} working closely with all stakeholders to facilitate the availability of effective treatments for the Condition. dl funding and supporting research to advan scientific understanding of the Condition and its effective treatment and to publish the useful results thereof for the public benefit. Statement confirming whether the trustees have had regard to the guidance issued by the Charity Commission on public benefit Para The main activilies associated with our objectives were fomed based on the guidance issued by the Charity Commission on public benefit. Additional information loptionall You ma choose to include further statements where relevant about-. SORP rtference NIA Para 1.38 Policy on grant making. NIA Para 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 Due to Covid this year has taken a different route than expected. Instead of organising UK regional Information Days we held them via zoom. We were able to organise medical talks and reached more patients and their carers using zoom. We also look part with other Amyloidosis groups worldwide on their zoom support meetings. We were also invited again by NICE to be Patient Experts on the evaluation panel for new Amyloidosis drug to represent the patient voice. We have been heavily involved in supporting and taking part in Amyloidosis suNeys organised by the Phamia companies and hospitals. In February we started a series of joint projects with the National Amyloidosis Centre in London and Phamia company lo make awareness of the importance of early diagnoses of the disease. We have started the Afro-caribbean Community outreach and disease awareness campaign. Summary of the main achievements of the charity, identifying the differen￿ the charity's work has made to the circumstances of ils beneficiaries and any wider benefits to society. Para 1.20 Additional information (optionall You ma choose lo include further statements where relevant about.. NIA Achievements against objectives set. Para 1.41 NIA Perfoman¢e of fundraising activities against objectives set. Pao 1.41 NIA Investmént performance against obje¢tives 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 continuing as a going concern Para 1.21 Cash at bank at 311312021 was £50.19K in unrestricted funds. Para 1.22 NIA Para 1.22 NIA NIA Para 1 22 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) Para 1.47 As a small charrty we do not have this. Investment policy and objectives including any social investment policy adopted. Para 1.46 The main risk to the charity is the restrictions that COVID-19 has presented. A description of the principal risks facing the charity. Para 1.48 Other Structure, Governance and Management Description of charity's trusts.. Type of governing document Para 1.25 How is the charity constituted? le.g., unincorporated Para 1.25 (Foundation model constitution) Charitable Incorporated Organisation (CIO) Trustee selection melhods 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 fomis part ofthe governing document. New trustees are selected by current trustees. Additional information (optional You ma choose to include further statements where relevant about., Forms part ofthe Foundation, model constitution. Policies and procedures adopted for the induction and training of trustees. Para 1.51 We have five trustees.. Chairman Treasurer Secretary Trustee Trustee We do not belong lo a wider nehvork. The charity's organisational structure and any wider network with which the charity works. Para 1.51 NIA Relationship wilh any related parties Para 1.51 Other Reference and Administrative details Charil name Other name the charit uses istered charit number Charity's principal address UKArrR Am NIA 1183624 The Old Parsonage. Hyde Lane, Hartington. SK17 OAP loidosis Patients, Association UKATPA Names of the Gharity trustees who manage the charity Office lif any) Dates a¢ted il not for full ear Name of person lor body) entitled toa oint trusteè if an Trustee namè Carlos Heras - Palou Vincent Nicholas David Gregory Ruth Bramwell Paul Pozzo Chairman Treasurer Secretary Truslee Trustee 10 12 13 14 15 16 17 18 19 20 Cor orate trustees - names of the directors at the date the re Director name ortwasa roved. NIA Name of trustees holding title to property belonging to the charity. Trustee namè Dates acted if not tor full èar NIA Funds held as custodian trustees on behalf of others. Description of the assets held in this capacity. NIA Name and objects ofthe charity on whose behalf the assets are held and how these falls within the ¢ustodian charity'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 infonnation) Type of Name Address adviser NIA Name of chief executive or names of senior stsff members {Optional infonnationl Exemptions from disclosure Reason for non-disclosure of ke ersonnel details NIA Other o tional information Declarations The trustees declare that they have approved tho trustees, report above. Signed on behalf of the charity's trustees Signaturels) Full name{sl Position (e.g., Secretary, Chair, etc Vincent Nicholas Treasurer Date 1$1 November 2021 ## **UK ATTR Amyloidosis Patients Association (UKATPA) INCOME SUMMARY** ## **YEAR ENDING** 31/03/2021 |**DATE**|**CUSTOMER**|**£**| |---|---|---| |14/04/2020|Akcea Theraputics|£180.00| |04/04/2020|Just Giving|£25.50| |11/05/2020|Akcea Theraputics|£72.35| |19/05/2020|Swii.ch Interview|£60.00| |09/06/2020|Friends House|£3,978.45| |14/08/2020|Cheque in at 404014|£180.00| |17/08/2020|Alnylam UK Ltd|£12,500.00| |26/11/2020|Ionis Pharmaceutic Coupa Pay217 3918|£500.00| |16/12/2020|Varkonyi-Weisz|£433.65| |18/12/2020|Alnylam UK Ltd|£12,500.00| |22/12/2020|Adept Field Solutions P3132-Inc|£300.00| |25/03/2021|Cheque in at 404014|£527.65| |25/03/2021|Paypal|£0.01| |||| |||| |||| |||| |||| |||| |||| |||| |||| |||| |||| |||| |||| |||| |||| |||| |||| |||| |||| |||| |||| |||| |||| |||| |||| £31.257.61 **UK ATTR Amyloidosis Patients Association (AKATPA) EXPENDITURE DETAIL YEAR END** 31/03/2021 |DATE|SUPPLIER|Total|GOODS &
MATERIALS|CAR, VAN
AND TRAVEL
EXPENSES|WAGES,
SALARIES
AND STAFF
COSTS|RENT,
RATES,
POWER &
INSURANCE|REPAIRS AND
RENEWALS
OF
PROPERTY &
EQUIPMENT|
ACCOUNTAN
CY, LEGAL &
PROFESSION
AL COSTS|INTEREST ON
BANK AND
OTHER
LOANS|
~~TELEPHONE,~~
FAX,
STATIONERY
AND OTHER
OFFICE
|ADVERTISING|BANK,
CREDIT
CARD
CHARGES|OTHER
BUSINESS
EXPENSES|CAPITAL
PURCHASES
(OVER £200)| |---|---|---|---|---|---|---|---|---|---|---|---|---|---|---| |###|David Gregory– Akcea Liverpo|o
180|||180|||||~~COSTS~~||||| |###|Clinical Research|3978.45|||||||||3978.45|||| |###|Clinical Research|3044.4|||||||||3044.4|||| |###|David Gregory– Akcea Liverpo|o
72.35|||72.35|||||||||| |###|David GregoryRBD30090H9P3|
144.8|||144.8|||||||||| |30/09/20|Payment charge|17||||||||||17||| |03/12/20|Anotherplanet|1124|||||||||1124|||| |14/12/20|ICO|35||||||35||||||| |23/12/21|SallyWilliams|100||||||100||||||| |23/01/21|Payment charge|17||||||||||17||| |23/02/21|Paul Pozzo – Thermal Mugs|32.15||32.15||||||||||| |15/03/21|Kate Taylor Inv 0008|625.68|||625.68|||||||||| |15/03/21|Kate Taylor TrainingExpenses|110||110||||||||||| |19/03/21|David GregoryZoom 21/22 Ch|
143.88||||||||143.88||||| |||||||||||||||| |||||||||||||||| |||||||||||||||| |||||||||||||||| |||||||||||||||| |||||||||||||||| |||||||||||||||| |||||||||||||||| |||||||||||||||| |9624.71||||142.15|1022.83|||135||143.88|8146.85|34||| |**UK ATTR Amyloidosis Patients Association (UKATPA)**|**UK ATTR Amyloidosis Patients Association (UKATPA)**|| |---|---|---| |**INCOME & EXPENDITURE ACCOUNT**||| |**YEAR ENDING:**|###|| |**INCOME**||| |SALES||31258| |**EXPENDITURE**||| |GOODS & MATERIALS||| |CAR, VAN AND TRAVEL EXPENSES|142|| |WAGES, SALARIES AND STAFF COSTS|1023|| |RENT, RATES, POWER & INSURANCE||| |REPAIRS AND RENEWALS OF PROPERTY & EQUIPMEN||| |ACCOUNTANCY, LEGAL & PROFESSIONAL COSTS|135|| |INTEREST ON BANK AND OTHER LOANS||| |TELEPHONE, FAX, STATIONERY AND OTHER OFFICE C|144|| |ADVERTISING|8147|| |BANK, CREDIT CARD CHARGES|34|| |OTHER BUSINESS EXPENSES||| |||-9625| |PROFIT/LOSS IN YEAR||21633| ## **UK ATTR Amyloidosis Patients Association (UKATPA) BALANCE SHEET ITEMS** CAPITAL PURCHASES (OVER £200) ## **UK ATTR Amyloidosis Patients Association (AKATPA) YEAR ENDING:** ### |Opening Balance|28564| |---|---| |Purchases|9624.71| |Sales/Donations|31258| |End Balance|50197| |Bank Balance as|| |per bank statement|| |at 31/03/21|50197| Difference (HARITY COMMISSION FOR ENGLANO ANO II'UE5 In*ndent examlnerfs rnport on the accounts IA( ATfR Amy￿01￿ AsborAtffi ¢UKATPA} JIKar21 C￿rtty 1181624 f¥* Trf) tr th• >*r •rthd 31hM12021. Xi11 fth• Arf). 14S d th• 2011 Aci wxl ln ￿rr￿kn9 my 11111V21 ¢>Jt•bw