**Charity number: 1010639** **The Society for the Study of Inborn Errors of Metabolism** **(A company limited by guarantee)** ## **Annual report and financial statements** For the year ended 31 December 2020 Registered number: 02567711 ## **The Society for the Study of Inborn Errors of Metabolism** ## **Contents** |**ontents**|| |---|---| ||Page| |Reference and administrative details|1| |Trustees’ report|2 - 8| |Independent auditor’s report|9 - 12| |Statement of financial activities|13| |Statement of financial position|14| |Statement of cash flows|15| |Notes to the financial statements|16 - 23| **The Society for the Study of Inborn Errors of Metabolism** ## **Reference and administrative details** For the year ended 31 December 2020 |**Trustees**|Prof Dr D M Cassiman| |---|---| ||Dr A Garcia-Cazorla| ||Prof Dr Med J D B Häberle| ||Prof G la Marca| ||Dr R J Lapatto| ||Dr H Michelakakis| ||Dr P B Mills, Treasurer| ||Asst Prof F M J Mochel| ||Prof E Morava-Kozicz| ||Dr M D S Quelhas| ||Prof J C Rocha| ||Prof G S Salomons, Chair| ||Prof M Schiff| |**Company secretary**|Prof M Schiff| |**Company registered number**|02567711| |**Charity registered number**|1010639| |**Registered office**|Boundary House| ||91-93 Charterhouse Street| ||London| ||EC1M 6HR| |**Independent auditor**|Buzzacott LLP| ||130 Wood Street| ||London| ||EC2V 6DL| |**Bankers**|Barclays Bank PLC| ||PO Box 43| ||Sheffield| ||S9 2LF| **1** **The Society for the Study of Inborn Errors of Metabolism** ## **Trustees’ report** For the year ended 31 December 2020 The Trustees present their annual report together with the financial statements of The Society for the Study of Inborn Errors of Metabolism (‘SSIEM’) (‘the Society’) for the year ended 31 December 2020. Since the Society qualifies as small under section 383 of the Companies Act 2006, the Strategic report required of medium and large companies under The Companies Act 2006 (Strategic report and Directors’ report) Regulations 2013 is not required. ## **STRUCTURE, GOVERNANCE AND MANAGEMENT** ## **Constitution** The Society is constituted under a Memorandum of Association dated 12 December 1990 and amended by Resolutions dated 13 September 1991, 6 September 2007, 31 August 2011 and 3 September 2014. It is a registered charity with its charity number being 1010639. The Society is limited by guarantee and does not have share capital. All Trustees are members of the Society and guarantee to contribute £1 in the event of winding up. ## **Trustees** The Trustees who served during the year were: Ms A Y Brown (resigned on 1 December 2020) Prof Dr D M Cassiman Dr A Garcia-Cazorla (appointed on 3 December 2020) Prof Dr Med J D B Häberle Prof G la Marca Dr R J Lapatto (appointed on 3 December 2020) Dr H Michelakakis Dr P B Mills, Treasurer (appointed on 1 December 2020) Asst Prof F M J Mochel Prof E Morava-Kozicz Prof K Ounap (resigned on 3 December 2020) Dr M D S Quelhas Dr A Ribes (resigned on 3 December 2020) Prof J C Rocha Prof G S Salomons, Chair Prof M Schiff, Secretary ## **OBJECTIVES AND ACTIVITIES** ## **Policies and objectives** The principal objective of the Society is to foster the study of inherited metabolic disorders and related topics **.** In order to further these objectives, membership of the Society promotes the exchange of ideas between professional workers in different disciplines who are interested in inherited metabolic disorders. The aim is pursued in scientific meetings, training courses and publications. The Society supports an annual symposium concentrating on different topics relating to inborn errors of metabolism each year and publishes its journals (Journal of Inherited Metabolic Disease (JIMD) and JIMD reports). **2** **The Society for the Study of Inborn Errors of Metabolism** ## **Trustees’ report (continued)** For the year ended 31 December 2020 Membership of the Society is open to all and especially to those who are professionally involved in metabolic disorders or related topics. ## **Public benefit** In supporting an annual symposium and publishing its journal, the Society aims to advance health by sharing ideas on different topics relating to Inborn Errors of Metabolism. In doing so, the Society has considered the Charity Commission's guidance on public benefit. ## **Organisational structure and decision-making** A General Council made up of Honorary Officers of the Society and additional members manage the organisation. The Honorary Officers are a Chair, a Secretary and a Treasurer. Council Members are elected at the Annual General Meeting. Honorary Officers are appointed by the General Council. Honorary Officers of the Society may hold office for three years and are eligible for re-appointment to the same office for a further three years. Members of the General Council other than Honorary Officers may hold office for three years; they may be re-elected for a further three years. All Honorary Officers of the Society and Members of the General Council are considered to be key management of SSIEM although all are non-paid volunteers. It should be noted that the previous SSIEM Treasurer is also a member of the European Research Network for Evaluation and Improvement of Screening, Diagnosis and Treatment of Inborn Errors of Metabolism (‘ERNDIM’) Board of Trustees and that the SSIEM pays ERNDIM for Education and Training Advisory Committee (‘ETAC’) administrative functions. The Finance Sub-Committee (‘FSC’) to help run the financial side of the Society was announced at the 2014 AGM and installed in 2015. The FSC comprises the current Honorary Treasurer, Honorary Chair, Honorary Secretary, Past Honorary Treasurer, Independent Financial Advisor, Executive Administrator and a Rathbones Advisor. ## **ACHIEVEMENTS AND PERFORMANCE** ## **Review of activities** During the year ended 31 December 2020 the Society published Journals and continued development of its own website and app. The SSIEM symposium scheduled to be held in Freiburg (2020) was postponed to 2022 due to the evolving pandemic (COVID-19); however a smaller virtual symposium was held in December 2020. The membership subscription structure remained the same, however the Standard and Subsidised High Income rates were increased slightly. SSIEM Education and Training Advisory Committee (ETAC) exercised its responsibilities for the training syllabi and the recognition of training centres for paediatric metabolic medicine. ETAC also organised the annual SSIEM Academy course which for 2020 had to be cancelled due to the pandemic. The SSIEM Journal of Inherited Metabolic Disease (JIMD) was again run from the JIMD Editorial Office in Heidelberg. A new agreement was made with the JIMD Editorial Office for 2020 and with continued support from the publishers, Wiley. The SSIEM offered modest financial support for non-profit organisations such as parent support groups or societies. In 2020 twelve applications were received in the 1[st] round and thirteen in the 2[nd] round. These applications were independently judged by a panel from the SSIEM Advisory Council. Seven awards were made for a total of €20,000. **3** **The Society for the Study of Inborn Errors of Metabolism** ## **Trustees’ report (continued)** For the year ended 31 December 2020 Travel support for educational activities for healthcare professionals seeking experience in centres of excellence is also available along with membership support. SSIEM and its sister societies host ICIEM (International Congress of Inborn Errors of Metabolism), a global symposium on a rotational basis. The surplus from the symposium goes to the hosting society which will be held in 2021 in Sydney, Australia and has been moved to November and scaled down due to the pandemic. ## **FINANCIAL REVIEW** ## **Principal funding** The overall income excluding any surplus from the symposium is used to pay the administrative and running costs of the Society including ETAC and to allow for publication of educational journals devoted to the study of the inborn errors of metabolism. Surplus funds are invested. Interest from investments is used in pursuance of the educational objectives of the Society. The Council is cognisant of the current global financial crisis and has taken steps to protect investment and secure the financial position of the Society so that it can continue to meet its objectives. The Honorary Office and Council have also reviewed the current position with regard to the COVID‐19 pandemic. The Society is truly international with membership drawn from more than 78 countries. The Society exists to promote the exchange of ideas between all who are professionally interested in inherited metabolic disease. It is the wish of the Council that this exchange should occur between members in as many countries as possible. The Council has agreed to set aside an amount of money from any surplus generated from normal activities to make membership more widely available to those who would otherwise be unable to participate without support from the Society. In 2020, the annual subscriptions of 4 (2019: 1) members were paid by the Society. ## **Results for the year** Overall the financial result for the year was a net decrease in the reserves of €34,476 to a year‐end figure of €2,734,481. ## **Reserves policy** It is the policy of the Society to maintain unrestricted funds, which are the free reserves, at a level that is sufficient to cover management and administration and support costs and allows the Society to be managed efficiently. This reserve is set at €1,000,000 (2019: €1,000,000). This is considered to be enough to cover a year’s worth of expenditure if no income were earned. The Council proposes that a proportion of the surplus funds are invested, currently €900,000 (2019: €900,000); the purpose of the investment is to provide the SSIEM with a modest income from its surplus. The remaining surplus is used in pursuance of the educational and charitable objectives of the Society. A limited number of grants are available to finance individual members to visit, or work for short periods of time in, other centres of expertise. Support of non‐profit organisations, such as parent support groups, is being further developed. Also available are travel bursaries, symposium scholarships and grants for the development of Guidelines. As at 31 December 2020 an unrestricted fund balance of €2,734,481 (2019: €2,768,957) was held. During the year, the Council utilised some of the reserves to develop the SSIEM Academy, website and app. Support of non‐profit organisations, such as parent support groups, was also promoted. ## **Investment policy and performance** All investments have been acquired in accordance with powers available to the Council. The assets are sufficient to guarantee normal running of the Society for a period of not less than one year and to support the SSIEM **4** **The Society for the Study of Inborn Errors of Metabolism** ## **Trustees’ report (continued)** ## For the year ended 31 December 2020 Symposium if there were financial difficulties. The Council considers that this is the best way of ensuring the independence of the Society and that its educational objectives can be fulfilled. Since the majority of assets are financial investments there is unlikely to be any delay or shortfall in realising the assets into cash if this becomes necessary. ## **Risk management** The Trustees have assessed the major risks to which the Society is exposed, in particular those related to the operations and finances of the Society, and are satisfied that systems and procedures are in place to mitigate our exposure to the major risks. The main risks and the methods by which the risks are mitigated are: ## Symposia risk Insurance against bodily or material harm including third parties. - Insurance against cancellation was considered unacceptably expensive and therefore inappropriate use of funds. However this can be reviewed with each symposium. - Agreement in regards to a force majeure event. It is expected that the above insurance policies and agreements are included in any contract with any Professional Conference Organiser (PCO) providing services for the annual Symposium. ## Data risk - The IT and data facilities are run under contract with the Association for Clinical Biochemistry and Laboratory Medicine Office. A back-up of data is routinely scheduled and held off-site, however, this agreement ended on 31[st] December 2020. Since then, the Society has transferred to 365 for all files, emails and backup of the accounts functions. The new database is being worked on and will again be a cloud-based system with full backup. - Compliance with new GDPR regulations. Specialist advice has been sought to ensure compliance. A policy is being drawn up. ## Financial risk - The major risk to SSIEM is the potential lack of success of the annual symposium which would be covered by SSIEM reserves. - The funds of the Society is conservatively managed and is considered to be low risk as funds are held in Sterling and Euro. ## COVID-19 - The uncertainty surrounding the COVID-19 pandemic worldwide; the Society continues to review the situation and look into holding virtual meetings and use all available IT facilities to engage with all those interested in inherited metabolic disorders. **5** **The Society for the Study of Inborn Errors of Metabolism** ## **Trustees’ report (continued)** For the year ended 31 December 2020 ## **PLANS FOR FUTURE PERIODS** ## **Future developments** The Council will continue to: - Develop the SSIEM own administration team. - Review and develop corporate governance. - Continually assess and manage risk. - Develop the new SSIEM website hosted by Carpemedia. Develop/update Symposium and SSIEM apps. - Support the Vademecum Metabolicum app if requested. - Support parent support groups or Societies through the funding award scheme. - Support healthcare professionals seeking experience in centres of excellence. - Encourage ERNDIM-SSIEM Collaboration. - Support and/or invite Societies to provide educational meetings or training courses. Support Guideline Developments. - Administration Support for the CDB-IMB-database and the cost of legal fees. ETAC will continue to: Canvas the views of SSIEM members on training issues. - Undertake accreditation visits when requested. - Update the training syllabus on a regular basis. - Consider whether courses in inborn errors of metabolism are suitable for training needs. Organise further specific training programmes as part of the SSIEM academy. Encourage ETAC-NAMA Collaboration. The Society actively encourages the formation of National Societies which can communicate with each other through the SSIEM to raise awareness of metabolic diseases so that standards of care and research are improved. ## **COVID-19** The decision to cancel the symposium planned for September 2020 in Freiburg was taken early (30[th] March 2020) to prevent further unnecessary expense for the SSIEM, speakers, delegates and industry. With travel restriction in place for most countries and indeed many countries still under lockdown the decision to postpone the Symposium was indeed correct. The SSIEM conference liaison Officer has been able to mitigate cancellation costs by negotiation with the venue and local conference organisers. Cancellation cost was €144,336 equating to 10% of the expense budget. A small proportion of this expense reflects design and planning which can be transferred to the 2022 symposium. The SSIEM will not realise any significant income in 2021 due to the ICIEM symposium in Sydney. It is fortunate that recent symposia have contributed to the SSIEM surplus providing a financial cushion at least for the next two years. However the SSIEM must be cognitive that other pandemics or a COVID-19 recurrence are a real risk and plan accordingly. The SSIEM has been able to host its Council meetings using video conferencing technology. This will reduce travel and accommodation costs. However at least one face to face meeting per year would be valuable. The SSIEM held a virtual conference to fill the gap in the 2020 calendar. The success of this event has helped the SSIEM to look into holding other events to benefit the membership. **6** **The Society for the Study of Inborn Errors of Metabolism** ## **Trustees’ report (continued)** For the year ended 31 December 2020 ## **Going concern** After making appropriate enquiries, the Trustees have a reasonable expectation that the Society has adequate resources to continue in operational existence for the foreseeable future. For this reason, they continue to adopt the going concern basis in preparing the financial statements. The Trustees have considered the impact of the current COVID-19 pandemic on the Society's ability to continue as a going concern. The Trustees do not consider this to be cause for material uncertainty in respect of the Society's abilities to continue as a going concern. The Society has adapted well, implementing contingency plans, and has continued to generate revenues despite the difficult circumstances. The Society has sufficient cash resources, including fixed asset investments, to continue for the foreseeable future, despite the current crisis. Therefore, the financial statements have been prepared on the going concern basis. ## **Trustees' responsibilities statement** The Trustees (who are also directors of The Society for the Study of Inborn Errors of Metabolism for the purposes of company law) are responsible for preparing the Trustees' report and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice). Company law requires the Trustees to prepare financial statements for each financial year. Under company law the Trustees must not approve the financial statements unless they are satisfied that they give a true and fair view of the state of affairs of the Society and of the incoming resources and application of resources, including the income and expenditure, of the Society 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 Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with ‘the Financial Reporting Standard applicable to the UK and Republic of Ireland’ (‘FRS 102’); make judgements and accounting estimates that are reasonable and prudent; - state whether applicable United Kingdom Accounting Standards have been followed, subject to any material departures disclosed and explained in the financial statements; and - prepare the financial statements on the going concern basis unless it is inappropriate to presume that the Society will continue in operation. The Trustees are responsible for keeping adequate accounting records that are sufficient to show and explain the Society's transactions and disclose with reasonable accuracy at any time the financial position of the Society and enable them to ensure that the financial statements comply with the Companies Act 2006. They are also responsible for safeguarding the assets of the Society 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 corporate and financial information included on the Society’s website. Legislation in the United Kingdom governing the preparation and dissemination of financial statements may differ from legislation in other jurisdictions. **7** **The Society for the Study of Inborn Errors of Metabolism** ## **Trustees’ report (continued)** For the year ended 31 December 2020 ## **Disclosure of information to auditor** Each of the persons who are Trustees at the time when this Trustees' report is approved has confirmed that: So far as that Trustee is aware, there is no relevant audit information of which the Society's auditor is unaware, and The Trustee has taken all the steps that ought to have been taken as a trustee in order to be aware of any relevant audit information and to establish that the Society's auditor is aware of that information. This confirmation is given and should be interpreted in accordance with the provisions of s418 of the Companies Act 2006. 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. ## **Small companies exemption** In preparing this report, the Trustees have taken advantage of the small companies exemptions provided by section 415A of the Companies Act 2006. This report was approved by the Trustees and signed on their behalf by: ## **Dr P B Mills** Treasurer Date: **8** ## **Independent auditor’s report to the Trustees of The Society for the Study of Inborn Errors of Metabolism** For the year ended 31 December 2020 ## **Opinion** We have audited the financial statements of The Society for the Study of Inborn Errors of the Metabolism (‘the Society’) for the year ended 31 December 2020, which comprise the Statement of financial activities, the Statement of financial position, the Statement of cash flows and the related notes, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 ‘The Financial Reporting Standard applicable in the UK and Republic of Ireland' (United Kingdom Generally Accepted Accounting Practice). In our opinion the financial statements: - give a true and fair view of the state of the Society's affairs as at 31 December 2020 and of its result for the year then ended; - have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice; and have been prepared in accordance with the requirements of the Companies Act 2006. ## **Basis for opinion** We conducted our audit in accordance with International Standards on Auditing (UK) (ISAs (UK)) and applicable law. Our responsibilities under those standards are further described in the auditor's responsibilities for the audit of the financial statements section of our report. We are independent of the Society in accordance with the ethical requirements that are relevant to our audit of the financial statements in the United Kingdom, including the Financial Reporting Council's Ethical Standard, and we have fulfilled our other ethical responsibilities in accordance with these requirements. We believe that the audit evidence we have obtained is sufficient and appropriate to provide a basis for our opinion. ## **Conclusions relating to going concern** In auditing the financial statements, we have concluded that the Trustees' use of the going concern basis of accounting in the preparation of the financial statements is appropriate. Based on the work we have performed, we have not identified any material uncertainties relating to events or conditions that, individually or collectively, may cast significant doubt on the Society's ability to continue as a going concern for a period of at least twelve months from when the financial statements are authorised for issue. Our responsibilities and the responsibilities of the Trustees with respect to going concern are described in the relevant sections of the report. **9** ## **Independent auditor’s report to the Trustees of The Society for the Study of Inborn Errors of Metabolism (continued)** For the year ended 31 December 2020 ## **Other information** The Trustees are responsible for the other information. The other information comprises the information included in the annual report, other than the financial statements and our auditor's report thereon. Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon. In connection with our audit of the financial statements, our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the audit or otherwise appears to be materially misstated. If we identify such material inconsistencies or apparent material misstatements, we are required to determine whether there is a material misstatement in the financial statements or a material misstatement of the other information. If, based on the work we have performed, we conclude that there is a material misstatement of this other information, we are required to report that fact. We have nothing to report in this regard. ## **Opinion on other matters prescribed by the Companies Act 2006** In our opinion, based on the work undertaken in the course of the audit: - the information given in the Trustees' report, which is also the directors’ report for the purposes of company law, for the financial year for which the financial statements are prepared is consistent with the financial statements; and - the Trustees' report, which is also the directors’ report for the purposes of company law, has been prepared in accordance with applicable legal requirements. ## **Matters on which we are required to report by exception** In the light of the knowledge and understanding of the Society and its environment obtained in the course of the audit, we have not identified material misstatements in the Trustees' report. We have nothing to report in respect of the following matters in relation to which the Companies Act 2006 requires us to report to you if, in our opinion: - adequate accounting records have not been kept, or returns adequate for our audit have not been received from branches not visited by us; or - the financial statements are not in agreement with the accounting records and returns; or certain disclosures of Trustees' remuneration specified by law are not made; or - we have not received all the information and explanations we require for our audit; or the Trustees were not entitled to prepare the financial statements in accordance with the small companies regime and take advantage of the small companies exemptions in preparing the Trustees’ report and from the requirement to prepare a Strategic report. ## **Responsibilities of Trustees** As explained more fully in the Trustees' responsibilities statement on page 7, the Trustees (who are also the directors of the charitable company for the purpose of company law) are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view, and for such internal control as the Trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error. **10** ## **Independent auditor’s report to the Trustees of The Society for the Study of Inborn Errors of Metabolism (continued)** For the year ended 31 December 2020 In preparing the financial statements, the Trustees are responsible for assessing the Society's ability to continue as a going concern, disclosing, as applicable, matters related to going concern and using the going concern basis of accounting unless the Trustees either intend to liquidate the Society or to cease operations, or have no realistic alternative but to do so. ## **Auditor's responsibilities for the audit of the financial statements** Our objectives are to obtain reasonable assurance about whether the financial statements as a whole are free from material misstatement, whether due to fraud or error, and to issue an auditor's report that includes our opinion. Reasonable assurance is a high level of assurance, but is not a guarantee that an audit conducted in accordance with ISAs (UK) will always detect a material misstatement when it exists. Misstatements can arise from fraud or error and are considered material if, individually or in the aggregate, they could reasonably be expected to influence the economic decisions of users taken on the basis of these financial statements. Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. The extent to which our procedures are capable of detecting irregularities, including fraud is detailed below. Our approach to identifying and assessing the risks of material misstatement in respect of irregularities, including fraud and non-compliance with laws and regulations, was as follows: - the engagement partner ensured that the engagement team collectively had the appropriate competence, capabilities and skills to identify or recognise non-compliance with applicable laws and regulations; and - the audit team held a discussion to identify any particular areas that were considered to be susceptible to misstatement, including with respect to fraud and non-compliance with laws and regulations; we considered the impact of COVID-19 on the Society and its internal controls; and - we obtained an understanding of the legal and regulatory frameworks that are applicable to the Society and determined that the most significant frameworks which are directly relevant to specific assertions in the financial statements are those that relate to the reporting framework (Statement of Recommended Practice: Accounting and Reporting by Charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the United Kingdom and Republic of Ireland (FRS 102) and the Charities Act 2011), the Companies Act 2006 and those that relate to data protection (General Data Protection Regulation). We assessed the susceptibility of the Society’s financial statements to material misstatement, including obtaining an understanding of how fraud might occur, by: making enquiries of management as to their knowledge of actual, suspected and alleged fraud; and - considering the internal controls in place to mitigate risks of fraud and non-compliance with laws and regulations. To address the risk of fraud through management bias and override of controls, we: **11** ## **Independent auditor’s report to the Trustees of The Society for the Study of Inborn Errors of Metabolism (continued)** For the year ended 31 December 2020 performed analytical procedures to identify any unusual or unexpected relationships; and tested journal entries to identify unusual transactions. In response to the risk of irregularities and non-compliance with laws and regulations, we designed procedures which included, but were not limited to: reading the minutes of meetings of those charged with governance; and enquiring of management as to actual and potential litigation and claims. There are inherent limitations in our audit procedures described above. The more removed that laws and regulations are from financial transactions, the less likely it is that we would become aware of non-compliance. Auditing standards also limit the audit procedures required to identify non-compliance with laws and regulations to enquiry of the Trustees and other management and the inspection of regulatory and legal correspondence, if any. Material misstatements that arise due to fraud can be harder to detect than those that arise from error as they may involve deliberate concealment or collusion. A further description of our responsibilities for the audit of the financial statements is located on the Financial Reporting Council's website at: www.frc.org.uk/auditorsresponsibilities. This description forms part of our Auditor's report. ## **Use of our report** This report is made solely to the Society’s Trustees, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006. Our audit work has been undertaken so that we might state to the Society’s members those matters we are required to state to them in an Auditor's report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the Society and the Society’s members, as a body, for our audit work, for this report, or for the opinions we have formed. Mark Worsey (Senior statutory auditor) for and on behalf of **Buzzacott LLP** Statutory Auditor 130 Wood Street London EC2V 6DL Date: 16 July 2021 **12** **The Society for the Study of Inborn Errors of Metabolism** ## **Statement of financial activities** For the year ended 31 December 2020 |**Income and expenditure**
**Note**
**Income from:**
Charitable activities – symposium and memberships
3
Charitable activities – journal royalties and courses
4
Investments
5
**Total income**
**Expenditure on:**
Charitable activities
6
Exceptional expenditure
9
**Total expenditure**
**Net income before investment gains and losses**
Unrealised gain on revaluation of fixed asset
investments
10
Net gain on investments
10
(Loss)/gain on retranslation of fixed asset
investments
**Net movement in funds**
**Reconciliation of funds:**
Total funds at 1 January 2020
13
**Total funds at 31 December 2020**|**Unrestricted**
**funds**
**2020**
**€**
**288,769**
**400,912**
**15,447**|Unrestricted
funds
2019
€
2,306,813
269,492
12,652| |---|---|---| ||**705,128**
**651,223**
**144,336**
**795,559**
**(90,431)**
**105,624**
**11,847**
**(61,516)**
**(34,476)**
**2,768,957**
**2,734,481**|2,588,867| |||2,349,126
-| |||2,349,126| |||239,741
62,985
2,624
43,515| |||348,865
2,420,092
2,768,957| The Statement of financial activities includes all gains and losses recognised in the year. All of the Society’s activities derived from continuing operations during the above two financial periods. The notes on pages 16 to 23 form part of these financial statements. **13** **The Society for the Study of Inborn Errors of Metabolism – Registered number: 02567711** ## **Statement of financial position** As at 31 December 2020 **----- Start of picture text -----**
2020 2019
Note € € € €
Fixed assets
Investments 10 1,215,138 1,095,171
Current assets
Debtors 11 445,667 641,617
Cash at bank and in hand 1,323,431 1,667,886
1,769,098 2,309,503
Creditors: amounts falling due within one year 12 (249,755) (635,717)
Net current assets 1,519,343 1,673,786
Net assets 2,734,481 2,768,957
Charity funds
Unrestricted funds:
General fund 13 2,595,782 2,558,440
Designated fund 13 138,699 210,517
2,734,481 2,768,957
Total unrestricted funds 2,734,481 2,768,957
**----- End of picture text -----**
The Trustees acknowledge their responsibilities for complying with the requirements of the Companies Act 2006 with respect to accounting records and the preparation of financial statements. The financial statements have been prepared in accordance with the provisions applicable to companies subject to the small companies regime and in accordance with the provisions of FRS102 Section 1A – small entities. The financial statements were approved by the Trustees on and signed on their behalf by: ## **Dr P B Mills** Treasurer The notes on pages 16 to 23 form part of these financial statements. **14** **The Society for the Study of Inborn Errors of Metabolism** ## **Statement of cash flows** For the year ended 31 December 2020 |**Cash flow from operating activities:**
Net cash (used in)/generated from operating activities
**A**
**Cash flow from investing activities**
Purchase of investments
Disposal of investments
Investment income
**(Net cash) used in investing activities**
**Change in cash and cash equivalents in the year**
**Cash and cash equivalents at beginning of year**
**Cash and cash equivalents at end of year**
**B**
**A Reconciliation of net income to net cash flow from operating activities**
**Net (loss)/income for the year (as per the Statement of financial activities)**
**Adjustments for:**
Gain on revaluation of investments
Gain on disposal of investments
Loss/(gain) on retranslation of fixed asset investments
Investment income
Decrease in debtors
(Decrease)/increase in creditors
**Net cash used in operating activities**
**B Analysis of cash and cash equivalents**
Cash at bank and in hand
Cash held by investment managers
**Total cash and cash equivalents**|**2020**
**€**
**(295,892)**
**(110,099)**
**46,089**
**15,447**
**(48,563)**
**(344,455)**
**1,667,886**
**1,323,431**
**2020**
**€**
**(34,476)**
**(105,624)**
**(11,847)**
**61,516**
**(15,447)**
**195,948**
**(385,962)**
**(295,892)**
**2020**
**€**
**1,295,080**
**28,351**
**1,323,431**||2019
€
675,208| |---|---|---|---| ||||(223,264)
14,436
12,562| ||||(196,266)
478,942| ||||1,188,944
1,667,886
2019
€
348,865
(62,985)
(2,624)
(43,515)
(12,562)
157,436
290,593
675,208
2019
€
**1,573,379**
**94,507**
**1,667,886**| **15** **The Society for the Study of Inborn Errors of Metabolism** ## **Notes to the financial statements** For the year ended 31 December 2020 ## **1. General information** The Society for the Study of Inborn Errors of Metabolism (‘the Society’) is a company limited by guarantee. The members of the Society are the Trustees named on page 1. In the event of the Society being wound up, the liability in respect of the guarantee is limited to £1 per member of the Society. The Society is incorporated in England and Wales. Its registered office and principal place of business is Boundary House, 91-93 Charterhouse Street, London, EC1M 6HR (to 19 November 2020 – 130-132 Tooley Street, London, SE1 2TU). The company registration number is 02567711 and the charity number is 1010639. ## **2. Accounting policies** ## **2.1 Basis of preparation of financial statements** The financial statements have been prepared under the historical cost convention, with the exception of investments, which are included on a market value basis. The financial statements have been prepared in accordance with the Statement of Recommended Practice: Accounting and Reporting by Charities applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (effective 1 January 2015) (Charities SORP FRS 102), Section 1A of Financial Reporting Standard 102, ‘The Financial Reporting Standard applicable in the United Kingdom and Republic of Ireland’ (‘FRS 102’), the Charities Act 2011 and the Companies Act 2006. The Society constitutes a public benefit entity as defined by FRS 102. The financial statements are presented in Euros (€). The principal accounting policies adopted, judgements and key sources of estimation uncertainty in the preparation of the financial statements are as follows: ## **2.2 Going concern** After making appropriate enquiries, the Trustees have a reasonable expectation that the Society has adequate resources to continue in operational existence for the foreseeable future. For this reason, the Society will continue to adopt the going concern basis in preparing the financial statements. The Trustees have considered the impact of the current COVID-19 pandemic on the Society's ability to continue as a going concern. The Trustees do not consider this to be cause for material uncertainty in respect of the Society's abilities to continue as a going concern. The Society has adapted well, implementing contingency plans, and has continued to generate revenues despite the difficult circumstances. The Society has sufficient cash resources, including fixed asset investments, to continue for the foreseeable future, despite the current crisis. Therefore, the financial statements have been prepared on the going concern basis. ## **2.3 Fund accounting** The general fund is an unrestricted fund which is available for use at the discretion of the Trustees in furtherance of the general objectives of the Society and which has not been designated for other purposes. ## **2.4 Income** All income is recognised in the Statement of financial activities when the Society has entitlement to the income, it is probable that the income will be received and the amount of income receivable can be measured reliably. ## _Annual symposium_ Symposium income is the gross revenue generated by the symposium organiser on behalf of SSIEM and includes the registration fees and sponsorship fees at the event. **16** **The Society for the Study of Inborn Errors of Metabolism** ## **Notes to the financial statements** For the year ended 31 December 2020 ## **2. Accounting policies (continued)** ## _Subscriptions income_ Income from subscriptions are recognised in the period the membership relates to. ## _Journal royalties_ Journal royalties are recognised on an accruals basis. ## _Investment income_ This comprises interest on bank deposits and National Savings Bank income bonds and dividend income. Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the Society. This is normally upon notification of the interest paid or payable by the bank. Dividends are recognised once the dividend has been declared and notification has been received of the dividend due. ## **2.5 Expenditure** Liabilities are recognised as expenditure as soon as there is a legal or constructive obligation committing the Society to make a payment to a third party or it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably. All expenditure is stated inclusive of irrecoverable VAT. All expenditure is accounted for on an accruals basis. Expenditure comprises direct costs and support costs. All expenses, including support costs, relate to the charitable activities of the Society. Expenditure on charitable activities includes all costs associated with furthering the charitable purposes of the charity through the provision of its charitable activities. Such costs have been apportioned as follows: Direct costs – These are the costs associated directly to meeting the charitable objects of the Society and include annual symposium expenditure, grants payable and costs incurred in respect of producing journals. - Support costs – These are the costs incurred directly in support of expenditure on the objects of the Society and include project management carried out at Headquarters. - Governance costs – These are the costs directly attributable to the meetings and audit process such as staff costs, printing, meetings and travel costs. ## _Annual symposium_ Symposium expenditure is the gross expenses incurred by the symposium organiser on behalf of the Society. ## _Grants payable_ Grants payable are charged in the year when the offer is made except in those cases where the offer is conditional, with such grants being recognised as expenditure when the conditions attached are fulfilled. Grants offered subject to conditions which have not been met at the year-end are noted as a commitment, but not accrued as expenditure. ## **2.6 Fixed asset investments** Investments are stated at market value at the reporting date. The Statement of financial activities includes the net gains and losses arising on revaluations and disposals throughout the year. ## **2.7 Debtors** Trade and other debtors are recognised at the settlement amount after any trade discount offered and net of any provision. Prepayments are valued at the net amount prepaid. **17** **The Society for the Study of Inborn Errors of Metabolism** ## **Notes to the financial statements** For the year ended 31 December 2020 ## **2. Accounting policies (continued)** ## **2.8 Cash at bank and in hand** Cash at bank and in hand includes cash and short term highly liquid investments with a short maturity of three months or less from the date of acquisition or opening of the deposit or similar account. ## **2.9 Liabilities and provisions** Liabilities are recognised when there is an obligation at the reporting date as a result of a past event, it is probable that a transfer of economic benefit will be required in settlement, and the amount of the settlement can be estimated reliably. Liabilities are recognised at the amount that the Society anticipates it will pay to settle the debt or the amount it has received as advanced payments for the goods or services it must provide. ## **2.10 Financial instruments** The Society only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value. ## **2.11 Foreign currencies** Monetary assets and liabilities denominated in foreign currencies are translated into Euros at rates of exchange ruling at the balance sheet date. Transactions in foreign currencies are translated into Euros at the rate ruling on the date of the transaction. Exchange gains and losses are recognised in the Statement of financial activities incorporating income and expenditure account. ## **3. Income from charitable activities – symposium and memberships** |Annual symposium
Subscriptions
Academy income
**Income from charitable activities – journal royalties and cours**
Journal royalties
Editorial expenses contribution
Courses|**Unrestricted**
**funds**
**2020**
**€**
**171,341**
**117,428**
**-**
**288,769**
**es**
**Unrestricted**
**funds**
**2020**
**€**
**400,342**
**-**
**570**
**400,912**|**Total**
**funds**
**2020**
**€**
**171,341**
**117,428**
**-**
**288,769**
**Total**
**funds**
**2020**
**€**
**400,342**
**-**
**570**
**400,912**|Total
funds
2019
€
2,164,044
134,831
7,938
2,306,813
Total
funds
2019
€
261,721
-
7,771
269,492| |---|---|---|---| ## **4. Income from charitable activities – journal royalties and courses** **18** **The Society for the Study of Inborn Errors of Metabolism** ## **Notes to the financial statements** For the year ended 31 December 2020 ## **5. Income from investments** |Income bonds
Interest income
Dividend income
**Analysis of charitable activities**
**Direct costs**
Council symposium expenses
Publication of journal
JIMD Honorarium
Academy expenses
Symposium awards
Symposium expenses
Symposium scholarships
Courses
**Total direct costs**
**Support costs**
Council travel and subsistence
Printing, postage, stationery and carriage
Exchange rate variance
Website costs
Other administration expenses
Secretarial expenses
Telephone and fax
IT supplies
Penalties & fines
Irrecoverable VAT
**Total support costs**
**Governance costs**
Audit & accountancy fees
Professional charges
**Total governance costs**
**Total expenditure on charitable activities**|**Unrestricted**
**funds**
**2020**
**€**
**5,060**
**2,620**
**7,767**
**15,447**
**Unrestricted**
**funds**
**2020**
**€**
**1,782**
**174,833**
**20,500**
**134,550**
**2,500**
**89,960**
**-**
**5,217**
**429,342**
**3,648**
**576**
**9,491**
**13,068**
**54,071**
**46,457**
**648**
**3,542**
**-**
**62,648**
**194,149**
**25,668**
**2,064**
**27,732**
**651,223**|**Total**
**funds**
**2020**
**€**
**5,060**
**2,620**
**7,767**
**15,447**
**Total**
**funds**
**2020**
**€**
**1,782**
**174,833**
**20,500**
**134,550**
**2,500**
**89,960**
**-**
**5,217**
**429,342**
**3,648**
**576**
**9,491**
**13,068**
**54,071**
**46,457**
**648**
**3,542**
**-**
**62,648**
**194,149**
**25,668**
**2,064**
**27,732**
**651,223**||Total
funds
2019
€
4,988
2,219
5,355
12,562
Total
funds
2019
€
29,428
173,479
19,000
107,968
1,236
1,511,284
29,286
100,114| |---|---|---|---|---| |||||1,971,795
67,069
23,493
(18,253)
29,405
44,641
82,922
646
5,044
4,239
98,776| |||||337,982
39,349
-| |||||39,349
2,349,126| ## **6. Analysis of charitable activities** No delegates were supported with financial grants (2019: 28 delegates totalling €29,286) during the year. **19** **The Society for the Study of Inborn Errors of Metabolism** ## **Notes to the financial statements** For the year ended 31 December 2020 ## **7. Trustees’ remuneration** No Trustees received any remuneration or benefits in kind in respect of their services during the year (2019: €Nil). During the year, 7 Trustees (2019: 14) received reimbursement of expenses totalling €5,207 (2019: €13,738). ## **8. Auditor’s remuneration** Auditor's remuneration amounts to a current year audit fee of €15,240 (2019: €20,599) and fees charged for other non-audit services amounts to €8,729 (2019: €18,750). ## **9. Exceptional expenditure** |Cancellation costs|**Unrestricted**
**funds**
**2020**
**€**
**144,336**
**144,336**|**Total**
**funds**
**2020**
**€**
**144,336**
**144,336**|Total
funds
2019
€
-
-| |---|---|---|---| During the year, cancellation costs totalling €144,336 were incurred by the Society with respect to the cancellation of the 2020 symposium. **20** **The Society for the Study of Inborn Errors of Metabolism** ## **Notes to the financial statements** For the year ended 31 December 2020 ## **10. Fixed asset investments** |**Investments at market value comprise of the following:**
Listed investments
Other investments
**Market value**
**Listed**
**securities**
**€**
At 1 January 2020
626,735
Additions at cost
110,099
Disposals at book value (proceeds: €46,087
Profit: €11,847)
(34,240)
Foreign exchange movement
(35,204)
Revaluations
105,624
At 31 December 2020
773,014
Historical cost
626,735||**2020**
**€**
**773,014**
**442,124**
**1,215,138**
**Other**
**investments**
**€**
468,436
-
-
(26,312)
-
442,124
468,436|**Total**
**€**
**1,095,171**
**110,099**
**(34,240)**
**(61,516)**
**105,624**| |---|---|---|---| ||||**1,215,138**| ||||**1,095,171**| ||||2019
€
626,735
468,436
1,095,171| Other investments comprise of £400,000 National Savings Bank income bonds, which have been retranslated into Euros at the year-end rate. Accordingly, they are included at cost, which represents the capital value of the bonds to the Society. Investments are held to provide an investment return. All fixed asset investments are held in the UK. ## **11. Debtors** |Symposium related debtors
Prepayments and accrued income|**2020**
**€**
**93,908**
**351,759**
**445,667**|2019
€
354,176
287,441
641,617| |---|---|---| **21** **The Society for the Study of Inborn Errors of Metabolism** ## **Notes to the financial statements** For the year ended 31 December 2020 ## **12. Creditors: Amounts falling due within one year** |Symposium related creditors
Other creditors
Accruals and deferred income
Deferred income at beginning of year
Resources deferred during the year
Amounts released from previous years
Deferred income at end of year||**2020**
**€**
**-**
**33,584**
**216,171**
**249,755**
**2020**
**€**
**1,890**
**68,495**
**(1,890)**
**68,495**||2019
€
300,563
76,348
258,806
635,717
2019
€
58,988
1,890
(58,988)
1,890| |---|---|---|---|---| Deferred income relates to the deferral of subscription income over the period to which it relates. ## **13. Unrestricted funds** |General fund
Designated fund|Balance at
1 January
2020
€
**2,558,440**
**210,517**
**2,768,957**|Income
€|Expenditure
€
(723,741)
(71,818)
(795,559)|Gain on
investments
€|Transfers
between
funds
€|**Balance at 31**
**December**
**2020**
**€**| |---|---|---|---|---|---|---| |||705,128
-
705,128||55,955
-
55,955|-
-
-|**2,595,782**
**138,699**
**2,734,481**| The general fund represents the ‘free reserves’ and the designated fund represents ring-fenced funding in respect of providing three and a half years of funding for a Scientific Deputy in the ERNDIM office. **22** **The Society for the Study of Inborn Errors of Metabolism** ## **Notes to the financial statements** For the year ended 31 December 2020 ## **14. Related party transactions** Ms A Y Brown, a Trustee of the Society during the year, is also a Trustee of the European Research Network for Evaluation and Improvement of screening, Diagnosis and Treatment of Inborn Errors of Metabolism (ERNDIM). During the year, ERNDIM provided services totalling €42,704 (2019: €66,715) for Education and Training Advisory Committee (ETAC) administrative functions. There was an amount payable to ERNDIM as at 31 December 2020 of €nil (2019: €2,208). **23**