## REPORT AND ACCOUNTS OF PNH SUPPORT FOR THE YEAR ENDED 31 MARCH 2021 **REPORT AND ACCOUNTS OF PNH SUPPORT FOR THE YEAR ENDED 31 MARCH 2021** Registered Charitable Incorporated Organisation (registered no.1161518) Registered Address: c/o 4 Buckland Road, London, E10 6QS Trustees: Maria Piggin, Neil Rowntree and Alex Naylor 1 REPORT AND ACCOUNTS OF PNH SUPPORT FOR THE YEAR ENDED 31 MARCH 2021 ## **CONTENTS** ||**Page**| |---|---| |Trustees report for the year ended 31 March|| |2021|3| |Annex A: Form CC16a - Receipts and Payments Accounts|| |for PNH Support for the year ended 31 March 2021|6| 2 REPORT AND ACCOUNTS OF PNH SUPPORT FOR THE YEAR ENDED 31 MARCH 2021 ## **REPORT OF THE TRUSTEES (for the year ended 31 March 2021)** The trustees present this report and receipts and payments accounts for the year ended 31 March 2021 The current trustees are set out on page 1. ## **Structure, Governance and Management** PNH Support is registered as a Charitable Incorporated Organisation (CIO) and is managed by four trustees. Nelson Ekwedike retired as longest serving trustee as required by paragraph 13(1) of the Constitution on 16 May 2020. The trustees operate within PNH Support’s constitution dated 30 April 2015 (the “Constitution”) amended by member resolution on 16 May 2020 to permit the AGM to be held virtually as a result of COVID 19. The Constitution is an ‘Association’ model and has voting members other than its trustees. PNH Support currently has 131 members. Membership is open to patients (and their families/carers) living with Paroxysmal Nocturnal Haemoglobinuria (“PNH”) living in England, Wales and Northern Ireland. The trustees have been appointed to ensure that the board has an appropriate level of skills to enable PNH Support to achieve its charitable objectives. ## **Objectives and Activities** The objects of PNH Support (as set out in its Constitution) are as follows: 1. To promote, protect and preserve the physical and mental health of those diagnosed with Paroxysmal Nocturnal Haemoglobinuria who reside in England, Wales and Northern Ireland (either permanently or temporarily) through the provision of support, education, advocacy and practical advice. 2. To advance the education of patients with PNH who reside in England, Wales and Northern Ireland, in particular but not exclusively by the provision of advice and a point of contact for newly diagnosed PNH patients, in England, Wales and Northern Ireland. 3 REPORT AND ACCOUNTS OF PNH SUPPORT FOR THE YEAR ENDED 31 MARCH 2021 PNH Support undertook the following activities during the year ended 31 March 2021 in order to further its charitable purposes for the public benefit: 1. maintained a community Facebook Page – in order to raise awareness of the - disease and include relevant updates - https://www.facebook.com/PNH Support-126655011000361/ 2. maintained and moderated a closed Facebook page with 242 members open to patients and their families living in the United Kingdom to disseminate news and events and facilitate discussion and support between members of the closed group about living with PNH 3. maintained a Twitter handle @PNHSupport in order to raise awareness of the disease and the patient group and disseminate information. 4. maintained and updated the website (www.pnhuk.org) in order to provide information and disseminate news and events relevant to the PNH community. 5. provided support to PNH patients including by directing them to the appropriate information sources or persons (including in relation to COVID 19) 6. produced a six monthly newsletter for members. 7. held a virtual AGM (due to COVID) on 16 May 2020 attended by 17 people. 8. held regular patient and family meetings over Zoom from June 2020 to March 2021 9. attended the virtual European Haematology Association Congress in June 2020 10. advocated on behalf of members with stakeholders such as Healthcare at Home, the PNH National Service, the NHS, and NHS England 11. participated in the National Institute for Health and Care Excellence (NICE) successful Single Technology Appraisal of ravulizumab (Ultomiris) for payment including undertaking a patient and carer survey of 75 people 12. participated in the NICE Single Technology Appraisal for pegcetacoplan (ongoing) including undertaking a patient and carer survey 13. participated in a NICE scientific advice process for a confidential new therapy for PNH 14. engaged with pharmaceutical companies developing new treatments for PNH with regard to the involvement of patients in the research and development process 15. member of the PNH Global Alliance comprising 8 PNH global patient organisations from 7 countries with the aim of collaboration and knowledge sharing to benefit our respective communities 16. represented bone marrow failure patients in the European Reference Network for rare haematological disorders (EuroBloodNet). 17. member of the “Together for Healthy Marrow Alliance” for rare bone marrow failure disorder patient organisations in the UK with the aim of collaboration and knowledge sharing to benefit our respective communities. 4 REPORT AND ACCOUNTS OF PNH SUPPORT FOR THE YEAR ENDED 31 MARCH 2021 ## **Financial Review** PNH Support received the following receipts in the year: Donations £376.70 Honoraria/consultancy fees £2,327.50 Grant funding £299.27 **Total £3,003.47** ## Reserves Policy The trustees have established reserves that will provide a sustainable level of working capital to ensure continuity of PNH Support, contemporaneous with it achieving its objectives. ## **Public Benefit Statement** The trustees have complied with their duty to have due regard to the guidance on public benefit published by the Charities Commission in exercising their powers or duties. ## **Responsibilities of the Trustees for the Preparation of Annual Accounts** PNH Support’s trustees are responsible for the preparation of the accounts and are required to assess whether the audit requirements of s144(2) of the Charities Act 2011 or an independent examination is required. The trustees are satisfied that PNH Support’s gross income for the period is less that the £25,000 threshold and as such, there is no requirement for an audit or an independent examiner’s statement. On behalf of the Trustees …………………………… Maria Piggin Chair PNH Support ………………………….. 3 July 2021 Date: 5 REPORT AND ACCOUNTS OF PNH SUPPORT FOR THE YEAR ENDED 31 MARCH 2021 ## **ANNEX A** Form CC16a Receipts and Payments Accounts for PNH Support for the year ended 31 March 2021 6 **PNH Support No (if any) Receipts and payments accounts** **CC16a** **For the period** Period start date Period end date **To from** 01/04/2020 31/03/2021 ## **Section A Receipts and payments** |**A1 Receipts**|**Unrestricted**
**funds**
**to the nearest**
**£**|**Unrestricted**
**funds**
**to the nearest**
**£**|**Restricted**
**funds**
**to the nearest £**|**Restricted**
**funds**
**to the nearest £**|**Endowment**
**funds**
**to the nearest £**|**Endowment**
**funds**
**to the nearest £**|**Total funds**
**to the nearest £**|**Total funds**
**to the nearest £**|**Last year**
**to the nearest £**| |---|---|---|---|---|---|---|---|---|---| |
Alexion Expense Reimbursment|||**-**||**-**||**-**||7| |Christmas Cards-Receipts|||**-**||**-**||**-**||23| |Donations|**377**||**-**||**-**||**377**||1,084| |Fee for Services / Honoraria|**2,328**||**-**||**-**||**2,328**||-| |Grant Funding for Zoom Licence [Apell|**299**||**-**||**-**||**299**||-| |
**_Sub total_**_(Gross income for AR)_|
**3,003**||**-**||**-**||**3,003**||**1,114**| ||||||||||| |**A2 Asset and investment sales,**
**(see table).**|||||||||| ||**-**||||||||**-**| ||**-**||||||||**-**| |**_Sub total_**|**-**||||||||**-**| |**_Total receipts_ **
**A3 Payments**|||||||||| ||||||||||**1,114**| ||||||||||| |
AGM & Conference|**-**||**-**||**-**||**-**||270| |EHA Congress|**-**||**-**||**-**||**-**||451| |Insurance - Zurich|**-**||**-**||**-**||**-**||364| |IT Service & Fees|**730**||**-**||**-**||**730**||333| |Members & Trustee Travel|**-**||**-**||**-**||**-**||236| |PNH Global Alliance MembershipFee|**229**||**-**||**-**||**229**||-| |PNH Support Website|**-**||**-**||**-**||**-**||98| |Postage|**58**||**-**||**-**||**58**||7| |RepayFee for Services|**-**||**-**||**-**||**-**||300| |Regional Patient Meetings|**-**||**-**||**-**||**-**||326| |Stationary|**-**||**-**||**-**||**-**||61| |Trustee Expenses|**-**||**-**||**-**||**-**||14| |**_Sub total_ **|**1,016**||**-**||**-**||**1,016**||**2,460**| ||||||||||| |**A4 Asset and investment**
**purchases, (see table)**|||||||||| ||**-**||||||||| ||**-**||||||||| |**_Sub total_ **|**-**||||||||**-**| |**_Total payments_ **
**_Net of receipts/(payments)_**
**A5 Transfers between funds**
**A6 Cash funds last year end**
**_Cash funds this year end_**|||||||||| ||||||||||**2,460**| ||||||||||| ||**1,987**||||||||**- 1,346**| ||**-**||||||||**-**| ||**7,588**||||||||**8,934**| ||**9,576**||||||||**7,588**| CCXX R1 accounts (SS) 02/07/2021 1 ## **Section B Statement of assets and liabilities at the end of the period** |**Categories**
**B2 Other monetary assets**
**B3 Investment assets**
**B4 Assets retained for the**
**charity’s own use**
**B5 Liabilities**
Signed by one or two trustees on
behalf of all the trustees
**B1 Cash funds**|Signature
Cash at Bank(HSBC)
**Details**
**_Total cash funds_**
(agree balances with receipts and payments
account(s))
**Details**
**Details**
**Details**
**Details**
Apple Air Laptop|**Unrestricted**
**funds**
**Restricted funds**
**to nearest £**
**to nearest £**
**9,576**
**-**
**-**
**-**
**-**
**-**
**9,576**
**-**
OK
OK
**Unrestricted**
**funds**
**Restricted funds**
**to nearest £**
**to nearest £**
**-**
**-**
**Fund to which**
**asset belongs**
**Cost (optional)**
**-**
**Fund to which**
**asset belongs**
**Cost (optional)**
**891**
**Fund to which**
**liability relates**
**Amount due**
**(optional)**
**-**
Print Name
Maria Piggin|**Endowment**
**funds**
**to nearest £**| |---|---|---|---| ||||**-**| ||||**-**| ||||**-**| ||||**-**| ||||OK| ||||**Endowment**
**funds**
**to nearest £**| ||||**-**| ||||**Current value**
**(optional)**| ||||**-**| ||||**Current value**
**(optional)**| ||||**200**| ||||**When due**
**(optional)**| ||||| ||||| ||||Date of approval| |||Maria Piggin|/ / 2021
03 07| ||||/ / 2021| CCXX R2 accounts (SS) 02/07/2021 2