2022-12-31-accounts

2022 Annual Report & Accounts

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Contents

Page	3	Constitutional Aims and Objectives
Page	3	AMEND and the Trustees
Page	4	Changes to AMEND and the Trustee Board
Page	5	Chairperson’s Report
Page	5	CEO’s Report
Page	6	2022 Overview
Page	8	2023 and Beyond
Page	9	Membership Report
Page	10	Fundraising Report
Page	11	Treasurer’s Report
Page	12	Statement of Financial Activities
Page	13	Balance Sheet
Page	14	Notes to the Financial Statements
Page	19	Independent Examiner’s Report
Page	20	Contact Information

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CONSTITUTIONAL AIMS AND OBJECTIVES

The object of the Charitable Incorporated Organisation (CIO) is to relieve people who suffer from Multiple Endocrine Neoplasia (M.E.N.) of all types, their families, friends, and carers by all or any of the following means:

• (1) Acting as a reliable and accurate source of information for the public concerning M.E.N. and its associated sporadic growths, by:

• (a) Working within the approval of members of the medical profession who are directly involved in the treatment of and research into M.E.N.

• (b) Collecting, collating, and distributing appropriate and approved information.

• (c) Producing the Charity’s own patient-aimed approved information.

• (2) Promoting a wider knowledge of the illness among the medical profession to assist in early and accurate diagnosis.

• (3) Providing reliable and accurate information with regard to genetic testing for people with M.E.N. and its associated familial growths, their families, friends and carers.

• (4) Providing emotional support to patients, their families, friends and carers in the form of contact with others in similar situations in order to facilitate the sharing of experiences.

AMEND AND THE TRUSTEES

The Trustee Board present their annual report together with the financial accounts of the Charity for the year ended 31 December 2022.

Structure, Governance and Management

AMEND is a Charitable Incorporated Organisation governed by a Constitution, vesting control and responsibility in the Trustee Board on behalf of the membership. The Trustees hold regular meetings to administer the Charity and their terms of office are determined by the AMEND Constitution. The term of office for an AMEND Trustee is three years beginning from the Annual General Meeting when voting in takes place.

Trustees’ Responsibilities for the Financial Statements

The trustees are responsible for preparing the Trustees’ Annual Report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

The law applicable to charities in England & Wales requires the trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charity and of the incoming resources and application of resources of the charity for that period. In preparing these financial statements, the trustees are required to:

• select suitable accounting policies and then apply them consistently;

• observe the methods and principles in the Charities SORP;

• make judgements and estimates that are reasonable and prudent;

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• state whether applicable accounting standards have been followed, subject to any material departures disclosed and explained in the financial statements;

• prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in operation

The trustees are responsible for keeping proper accounting records that disclose with reasonable accuracy at any time the financial position of the charity and enable them to ensure that the financial statements comply with the Charities Act 2011, the Charity (Accounts and Reports) Regulations 2008 and the provisions of the trust deed. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

The trustees are responsible for the maintenance and integrity of the charity and financial information included on the charity’s website. Legislation in the United Kingdom governing the preparation and dissemination of financial statements may differ from legislation in other jurisdictions.

Barney Harrison Outgoing Chair of the AMEND Board of Trustees 4 September, 2023

CHANGES TO AMEND AND THE TRUSTEE BOARD

New Trustees:

The following Trustees were appointed to the Board at the 2022 AGM:

1. Graeme Cohen

2. Bob Millinship

3. Sarah Norman

Retiring Trustees:

The following Trustees retired during 2022 and we thank them wholeheartedly for their service to AMEND over the years:

1. Laura Jones

2. Louise Breen

Trustee Executive Committee:

There were no changes to the Executive Committee during 2022

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CHAIRPERSON’S REPORT

During my 11 years on the Board:

1. AMEND has never stopped moving forward in terms of the resources it provides to its users.

2. Despite increased activity and expansion, AMEND has remained efficient and effective.

3. AMEND’s reach nationally and internationally has grown.

4. The commitment shown by both Jo and Helen to AMEND is the keystone of the charity’s success.

To the Trustees past and present, thank you for your patience with the Chair. Thanks to Jo and Helen for their gentle guidance.

I wish AMEND continued success and have no doubt with Gill taking on her new role the future is assured.

Barney Harrison Outgoing Chair of the AMEND Board of Trustees 4 September, 2023

CHIEF EXECUTIVE’S REPORT

Dear all,

2022 was another year of continued change, despite the lessening impact of the pandemic. Big changes included moving office half-way through the year, to a smaller and slightly cheaper home in Tonbridge. Later in the year, the Trustees undertook a Strategic Plan review to plan for the next few years when charities, including ours, will face tougher times, particularly financially. This resulted in plans to help secure the sustainability of the charity, alongside our everyday work of providing information resources and support services to our disease communities.

As usual, our fundraisers, grantees, and donors were essential to the success of our work-streams, and we thank you all for your continued support from the bottom of our hearts.

Jo Grey AMEND Chief Executive Officer 4 September, 2023

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2022 OVERVIEW

Source of Information

66 members registered to attend the 2022 Annual Patient Information Day in Manchester for free at a cost of £50 per head to AMEND

AMEND spent over £4,750 on an audio visual resource: specifically a cartoon for children aged 5 to 8 years affected by inherited paraganglioma syndromes

Provision of Support

169 membership packs (worth £10 each) were sent out by AMEND to new members costing £1,690

187 new patient & family members, and 13 health professionals joined AMEND for free in 2022.

200 counselling sessions were provided to AMEND members at a cost of £50 per session. Counsellors also provided support sessions to volunteers at a cost of £85 per hour and attended the Information Day to provide support for Young Adults.

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8 virtual peer support meetings were held during 2022 for the benefit of our members. 100% of those who responded to the feedback survey were keen to repeat the experience

Raise Awareness of MEN & Associated Endocrine Conditions

The AMEND CEO gave a patient participation lecture to 2[nd] year medical students at University College London, another lecture to MSc endocrinology students at QMUL, and a presentation on patient experience of MEN syndromes to endocrine nurses at a conference

AMEND had a presence at 4 in-person UK medical conferences (exhibition stands and a talk) including ECE 2022, where AMEND hosted a patient hub session on behalf of EMENA

Advocacy

The AMEND CEO was appointed to represent the ACC Community within the Scottish ACC Committee to help improve the patient pathway for those with ACC in Scotland

AMEND was granted affiliated member status of the Society for Endocrinology (UK) and the European Society for Endocrinology

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Research

AMEND continued recruitment for Community Advisory Groups to assist in providing the patient voice to research.

AMEND approved funding of 2 research projects (PPGL, ACC) worth a total of almost £17,000. A £10,000 ACC Research grant was provided by the Elliot Dallen Trust for administration by AMEND

2023 AND BEYOND

The current and forecast economic climate is worrying for UK charities, with higher costs and reduced donations and grants. Our focus for the next few years is on sustainability of finances and personnel, whilst continuing to address our core aims of providing quality information resources and support services to our communities. The Board of Trustees developed a new strategic plan at the end of 2022 to take these issues into account going forwards.

Plans remain to develop a smartphone app to replace and expand on our MEN Passports, as well as resources on signs and symptoms of our tumours for GPs. We will also investigate more collaborative opportunities with other registered charities to maximise resources.

For anyone interested in getting involved, please visit our website where you will find information on volunteering.

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MEMBERSHIP REPORT

AMEND offers free membership to patients, their family and friends, as well as to healthcare professionals. Our patient communities cover multiple endocrine neoplasia disorders, phaeochromocytoma & paraganglioma syndromes, adrenocortical cancer, sporadic phaeochromocytomas and medullary thyroid cancer.

AMEND’s patient/family members totalled 1249 by the end of 2022 (1060 in 2021), showing its continued upward membership registrations.

----- Start of picture text -----
Total Membership 2018-
2022
1249
1060
878
711 730
2018 2019 2020 2021 2022
Number of members
----- End of picture text -----

Whilst much of our membership base is understandably in the UK, patients from many countries around the world also continue to appreciate AMEND’s membership benefits. A charge applies to overseas members to cover the cost of shipping Membership Packs where requested.

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FUNDRAISING REPORT

Huge thanks go to the following for their extraordinary fundraising efforts and financial or in-kind donations during 2022:

Jack Maynard and Team (National 3 Peaks Challenge), Tina Masters and family (Virtual Lands End to John O’Groats), Jason (Twitch), Kerry Godfrey (craft sales), Natalie Keeling (Lockton Charitable Association nomination), Elly Fitzgibbon, Alan Maw, Jatinder Bedi, Haspreet Bhatiwal, Gurminder Kainth and Karim Meeran (ASICS London 10k Run), Jo Grey, Alan Grey, Kelly McGee, Kathy Rice and Anna Savin (Petra Trek), Sarah Webb (Cycle the Nile), George Wandless and Marc Donnison (Great North Run), Kate Richmond, Elly Fitzgibbon, Gill Waller and Emma Williams (Great South Run), Amy Atkin (Pavilion Day Nursery Fundraiser), Fern Richardson (Leicester Half Marathon), Kenny Taggart and Sara Wilson (Great Scottish Half Marathon), Not the Fayers Cup Charity Golf Challenge teams.

Thank you to our 2022 corporate or grant-giving supporters: the Houghton Dunn Charitable Trust, the Society for Endocrinology, HRA Pharma, and the Elliot Dallen Trust.

Finally, thank you to everyone who has donated (anonymously or not), or offered their time for free over the past year. You really make a difference!

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TREASURER’S REPORT

2022 results . The charity’s total incoming resources were £130,264 (2021 £93,239) – up 39.7% on the previous year but still less than the income we received prior to the Covid-19 pandemic. We would like to thank our members and grant funders who continued to support us during the year.

Although our income was up, our expenses were up as well and the charity ended the year with a small deficit of £9,132. The expenditure included £18,950 in research grants.

Reserves . AMEND’s undesignated unrestricted reserves now stand at £49,093 (2021 £47,821). Due to the high-risk nature of our main funding stream (voluntary grants and donations), we aim to retain general funds of £60,000. This is a level reasonable enough to ensure that AMEND could continue to operate its core activities for six months while enabling it to identify and utilise replacement funding streams.

Catherine Hamilton-Woodthorpe Treasurer 4 September, 2023

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STATEMENT OF FINANCIAL ACTIVITIES

For the Year ended 31 December 2022

notes Income and endowments from: Donations and legacies 5 Charitable activities 6 Other trading activities 7 Investments Total income and endowments Expenditure on: Raising funds 8 Charitable activities 9 Support costs 10 Governance costs 11 Total expenditure Net income / (expenditure) Transfers between funds 13 Net movement in funds Reconcilation of funds Total funds brought forward Total funds carried forward	Restricted £ - 36,791 - -	2022 Unrestricted £ 92,603 10 416 444	Total Funds £ 92,603 36,801 416 444	Restricted £ - 10,880 10 -	2021 Unrestricted Total Funds £ £ 81,428 81,428 193 11,073 689 699 39 39 82,349 93,239 8,427 8,427 57,827 98,793 21,498 21,498 883 919 88,635 129,637 (6,286) (36,398) (6,533) -
	36,791	93,473	130,264	10,890
	- 28,727 - -	9,767 74,060 24,843 1,999	9,767 102,787 24,843 1,999	- 40,966 - 36
	28,727	110,669	139,397	41,002
	8,064 1,134	(17,196) (1,134)	(9,132) -	(30,112) 6,533
	9,198 14,022	(18,330) 151,770	(9,132) 165,792	(23,579) 37,601	(12,819) (36,398) 164,589 202,190
	23,220	133,440	156,660	14,022	151,770 165,792

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BALANCE SHEET

As at 31 December 2022

note Fixed assets 12 Current assets Stock Prepayments and accrued income Cash at bank Deposit account Current accounts Creditors: amounts falling due within one year Trade creditors Payroll taxes Pensions payable Accruals Net current assets Total net assets Funds of the Charity Restricted income fun 13 Designated funds 14 Unrestricted funds Total Charity Funds	2022 2021 £ £ 1,979 1,710 3,683 3,321 3,540 1,300 140,218 155,066 11,070 5,712 158,511 165,399 (2,205) (6) (503) (363) (522) (348) (600) (600) (3,830) (1,317) 154,681 164,082 156,660 165,792 23,220 14,022 84,347 103,949 49,093 47,821 156,660 165,792

These financial statements were approved by the Trustees on 5 September, 2023 , and are signed on their behalf by

Catherine Hamilton-Woodthorpe Treasurer 4 September, 2023

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NOTES TO THE FINANCIAL STATEMENTS

For the year ended 31 December 2022

1. ACCOUNTING POLICIES

The financial statements have been prepared under the historical cost convention and in accordance with applicable accounting standards and with the Charities Accounting Statement of Recommended Practice (SORP FRS 102).

a) Grants and voluntary income

All grants and voluntary income are accounted for in the year when they are received unless receipt has become certain at the balance sheet date.

• b) Deferred income Income which has been received for a purpose which has not been commenced at the balance sheet date is deferred to a future period.

• c) Other income and expenditure

Other income and expenditure is accounted for on the accruals basis.

• d) Resources expended

Resources expended are recognised in the period in which they are incurred and include attributable VAT which cannot be recovered. Expenditure is allocated by activity in the first instance and, where practical, is also allocated to a cost centre. e) Allocation of costs

• Costs directly related to an activity are allocated to that activity. Support costs which are necessary to deliver an activity but do not themselves deliver the activity, are allocated in proportion to the benefit attributable based on an internal assessment of time spent and resources used. Governance costs are those costs incurred in meeting statutory and constitutional requirements.

• f) Investments

All investments stated as current, being monetary assets, are stated at cost.

• g) Stocks Promotional merchandise, held for sale, is valued at cost.

• h) Fixed assets and depreciation Fixed assets are capitalised and depreciated over the estimated useful life as follows: 33% on cost.

• i) Funds

• Unrestricted funds are those which are received from funding bodies and other donors and can be spent on the general objectives at the discretion of the trustees.

• Restricted funds are those which are given for a specific purpose or project as defined by the funder, and where the funder may require repayment if the conditions are not met.

• Designated funds are unrestricted funds which have been earmarked by the trustees for specific, usually short term, purpose within the general objectives.

• j) Donated goods and services Donated goods and services are included at their value to the charity as determined by the trustees.

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NOTES TO THE FINANCIAL STATEMENTS (continued)

For the year ended 31 December 2022

2. TAXATION

As a registered Charitable Incorporated Organisation, the association is not liable to income or capital taxes.

3. TRUSTEE REMUNERATION

No Trustees received any remuneration in 2022. 5 Trustees received reimbursement totalling £347.45 (2021: £149.65) to cover the cost of travel to attend board meetings and conferences to represent AMEND.

4. STAFF COSTS AND AVERAGE NUMBERS

Wages and salaries Employer pension contributions Management and administration Patient Support administrator Total	2022 £ 44,072 1,322 45,394 1 1 2	2021 £ 39,109 1,173
		40,282
		1 1 2

5. DONATIONS AND LEGACIES Donations and gift aid Grants 6. INCOME FROM CHARITABLE ACTIVITIES Grants for charitable activities Other 7. INCOME FROM OTHER TRADING ACTIVITIES Sale of merchandise	2022 2021 Restricted Unrestricted Total Total £ £ £ £ - 62,103 62,103 51,428 - 30,500 30,500 30,000 - 92,603 92,603 81,428 36,791 - 36,791 10,880 - 10 10 193 36,791 10 36,801 11,073 - 416 416 699 - 416 416 699

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NOTES TO THE FINANCIAL STATEMENTS (continued)

For the year ended 31 December 2022

8. RAISING FUNDS Staff costs Merchandise Other 9. CHARITABLE ACTIVITIES Staff costs Patient information printing, booklets and websites Patient information events and conferences Patient education films Patient representation Research grants and awards ACC support and ACC research grants ACC staff costs Patient support and counselling 10. SUPPORT COSTS Rent Staff costs Printing, postage and office supplies Telephone IT support IT software and consumables Insurance Finance charges Exchange difference Depreciation Legal fees Repairs and maintenance Travel and accommodation General Office move 11. GOVERNANCE Independent examiner Trustee meetings, AGM and other

2022 2021 Restricted Unrestricted Total Total £ £ £ £ - 7,086 7,086 6,445 - 628 628 657 - 2,053 2,053 1,325 - 9,767 9,767 8,427 - 23,947 23,947 22,265 2,481 3,104 5,585 2,943 7,310 1,966 9,276 17,902 - 10,321 10,321 14,888 - 100 100 - 10,000 18,950 28,950 19,595 2,499 - 2,499 840 834 8,023 8,857 8,056 5,603 7,649 13,252 12,304 28,727 74,060 102,787 98,793 - 12,856 12,856 14,534 - 4,396 4,396 3,516 - 1,236 1,236 846 - 318 318 - - 810 810 209 - 1,292 1,292 606 - 704 704 632 - 294 294 122 - (183) (183) - - 931 931 999 - 35 35 35 - 618 618 - 435 435 - - 37 37 - 1,065 1,065 - - 24,843 24,843 21,499 - - - 600 - 1,999 1,999 319 - 1,999 1,999 919

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NOTES TO THE FINANCIAL STATEMENTS (continued)

For the year ended 31 December 2022

12. TANGIBLE FIXED ASSETS Cost At 1/1/22 Additions At 31/12/22 Depreciation At 1/1/22 Charge for the year At 31/12/22 Net book value at 31/12/22 Net book value at 1/1/22	Equipment £ 12,921 1,200
	14,121
	11,211 931
	12,142
	1,979
	1,710

13. RESTRICTED INCOME FUNDS

Anonymous donor ACC Support UK Cartoon Licence Sanofi Barnes Construction Golf Day HRA Pharma - ACC films Licence to use ACC film clips Society for Endocrinology Big Give - Counselling Big Lottery - Regional Volunteers HRA Pharma - Counselling HRA Pharma - APID 2022 Elliot Dallon	B/forward £ 677 - 380 86 7,079 5,000 800 - - - - - - 14,022	Income D £ - 3,333 - - - - - 4,105 3,263 9,090 2,000 5,000 10,000 36,791	irect costs £ (677) (3,333) (380) (86) - - - (2,514) (3,263) (340) (2,000) (6,134) (10,000) (28,727)	Transfer from reserves Balance £ £ - - - - - - - - - 7,079 - 5,000 - 800 - 1,591 - - - 8,750 - - 1,134 - - - 1,134 23,220

• A trust fund, who prefer to remain anonymous, provided £11,000 in 2018 for redevelopment of the AMEND website.

• ACC Support UK is for a standalone group for patients in the UK with adrenocortical cancer, in a joint venture with the Neuroendocrine Cancer UK.

• A cartoon licence was granted to Belangengroup MEN in The Netherlands to translate and use our children's cartoons on MEN.

• Sanofi provided a patient group grant towards the costs of sporadic medullary thyroid cancer patient event in 2018

• Ipsen provided an unrestricted grant to develop patient films about MEN2A

• The proceeds of Barnes Construction's Gold Day are to be used for MEN1 research awards

• HRA Pharma provided a grant in 2019 to produce ACC patient films

• Licence given to HRA Pharma for use of ACC patient film clips and to be used against ACC podcasts in 2023

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NOTES TO THE FINANCIAL STATEMENTS (continued)

For the year ended 31 December 2022

13. RESTRICTED INCOME FUNDS (Continued)

• Society for Endocrinology Patient Group Grant to update resources

• The Big Give Christmas Challenge Campaign raised funds for our Counselling Service

• The National Lottery Community Fund provided a grant for our Peer Support Meetings for 20222023

• HRA Pharma provided a grant to help with the costs of our 2022 Annual Patient Information Day and Counselling Service

• The Elliot Dallan Charitable Trust provided a grant of £10,000 for a research grant into adrenocortical cancer.

14. DESIGNATED FUNDS

Counselling service Research Fund Hardship fund Personnel contingency fund Research Registry Project	B/forward Income Direct costs Transfer to unrestricted Balance £ £ £ £ £ 5,730 10,000 (6,652) - 9,078 63,469 - (18,950) - 44,519 750 - - - 750 30,000 - - - 30,000 4,000 - - (4,000) -
	103,949 10,000 (25,602) (4,000) 84,347

15. RELATED PARTY TRANSACTIONS

There were no related party transactions in 2021 or 2022.

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INDEPENDENT EXAMINER’S REPORT TO THE TRUSTEES

Independent Examiner's Report to the Trustees of the AMEND Charity

• I report to the charity trustees on my examination of the accounts of the charity for the year ended 31 December 2022 which are set out on pages 12 to 18.

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 charity’s accounts carried out under section 145 of the 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 statement

• I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect:

• 1. accounting records were not kept in respect of the charity as required by section 130 of the Act; or

• the accounts do not accord with those records; or

• the accounts do not comply with the applicable requirements concerning the form and content of accounts set out in the Charities (Accounts and Reports) Regulations 2008 other than any requirement that the accounts give a ‘true and fair view’ which is not a matter considered as part of an independent examination.

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:

Chris Lamb, FCA Independent Examiner Raymond Benn & Co. Ltd 1 Sheffield Road, Southborough Tunbridge Wells, Kent TN4 0PD

5 September, 2023

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CONTACT INFORMATION

Association for Multiple Endocrine Neoplasia Disorders (AMEND)

Tyler House, 58-66 Morley Road Tonbridge, Kent, TN9 1RA 01892 516076 / 841032 [e-mail] Website: www.amend.org.uk Facebook: www.facebook.com/AssociationforMENdisorders X: www.twitter.com/AmendInfo (@AmendInfo)

Jo Grey (CEO) Tel: [phone] Email: [e-mail] Helen Blakebrough (Exec Admin) Tel: [phone] Email: [e-mail]

AMEND Trustee Board

Barney Harrison (Outgoing Chair) Catherine Hamilton-Woodthorpe (Treasurer) Gill Masters Professor Karim Meeran Dr John Ayuk Ms Miriam Asia, RN Andy Price Karen Williams Robert Millinship Sarah Norman Graeme Cohen

Patrons

Recorder, Mrs Jo Delahunty, KC, MA (Oxon) Jurisprudence Professor Rajesh Thakker, May Professor of Medicine, OCDEM, Churchill Hospital, Oxford

Mr Shaun Williamson, Actor

AMEND UK Medical Advisory Team (AMAT)

Dr Caroline Brain, Professor Maralyn Druce, Professor Ashley Grossman, Dr Fiona Lalloo, Mr David Scott-Coombes, Professor Rajesh Thakker, Dr Scott Akker, Dr Ruth Casy, Professor Wiebke Arlt, Dr Cristina Ronchi, Professor Nick Reed, Mr Radu Mihai

Independent Examiner

Mr Chris Lamb, FCA Raymond Benn & Co Limited Sheffield Stables 1 Sheffield Road Southborough Tunbridge Wells Kent TN4 0PD

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