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2022-03-31-accounts

Company no. 05460413 Charity no. 1110661

Rare Chromosome Disorder Support Group Report and Audited Financial Statements 31 March 2022

Rare Chromosome Disorder Support Group

Reference and administrative details

For the year ended 31 March 2022

Company number 05460413 Charity number 1110661 Registered office and F4, The Stables operational address Station Road West Oxted Surrey RH8 9EE Trustees Trustees, who are also directors under company law, who served during the year and up to the date of this report were as follows: Helen Campbell Chair Isobel Hindle Trustee Edna Knight, MBE Founder, Life President, Trustee Gillian Manvell Trustee Shwetha Ramachandrappa Trustee Sophie Sainty Trustee Benjamin Stern Trustee James Toop Trustee Fiona de Zoete Trustee Chief executive officer Beverly Searle, PhD retired 31 August 2021 Dr Sarah Wynn appointed 1 September 2021 Company secretary Craig Mitchell MInstF (Dip) Patrons Professor Dian Donnai, UK Professor Jean-Pierre Fryns, Belgium Professor Judith Hall, Canada Baroness Pauline Neville-Jones, UK Professor Albert Schinzel, Switzerland

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Rare Chromosome Disorder Support Group

Reference and administrative details

For the year ended 31 March 2022

Bankers Charities Aid Foundation Lloyds Bank
Kings Hill PO Box 545
West Malling Faryners House
Kent 25 Monument Street
ME19 4TA London
EC3R 8BQ
United Trust Bank Yorkshire Building Society
1 Ropemaker Street Yorkshire House, Yorkshire Drive
London Bradford
EC2Y 9AW BD5 8LJ
Virgin Money plc
Jubilee House
Gosforth
Newcastle-upon-Tyne
NE3 4PL
Auditors Godfrey Wilson Ltd
Chartered accountants and statutory auditors
5th Floor, Mariner House
62 Prince Street
Bristol
BS1 4QD

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2022

Hello and welcome to Unique’s annual report and accounts for the year ended 31 March 2022.

This has been a year of significant change for Unique but one in which we have continued to serve families affected by rare chromosome and gene disorders with the same excellent service that has become our hallmark. In August 2021, Dr Beverly Searle took a well-earned retirement, having served Unique with distinction for over 30 years, first as a volunteer, then as Director of Development and for more than 20 years as Chief Executive Officer. Beverly led the charity through a period of huge change, steering us through our development from an informal support group helping a small number of families, to the significant, growing and award-winning charity we are today, providing a crucial service to many thousands of families. She leaves with our sincere and heartfelt thanks and we wish Beverly and her husband Trevor, who designed and supported our database and volunteered for Unique over many years, a long and happy retirement.

Given the challenging climate that we as a small charity are operating in, we felt that continuity was important. We were therefore delighted when Dr Sarah Wynn accepted our offer to become Unique’s Interim CEO from September 2021. We asked her to work with our Chief Operating Officer Craig Mitchell to co-lead the charity and formulate our next 3-5 year operating strategy to steer us through this uncertain period and into the future. Sarah has worked for Unique since 2007 and was able to hit the ground running, bringing fresh energy and enthusiasm that will build on our solid foundations to take Unique forward to the next stage of our development. She and Craig have already begun the significant project to replace our current database, the cornerstone of much of our work, which will be crucial if we are to cope with the ongoing steep increases in demand.

As we all continue our cautious return to normality after the pandemic, we are conscious that we will continue to be buffeted by external, macro-economic factors. Accordingly, we have taken a conservative approach, budgeting to protect our key services by continued investment in the provision of specialist information and softer support. Financially, whilst our income was slightly down this year as Covid support was withdrawn, we were pleased that fundraising activities and voluntary income held up well. We are hugely grateful to everyone who fundraised for us, donated and helped raise awareness. This meant that we were able to increase expenditure to maintain and develop the capacity of our frontline services, so important to families and professionals alike.

Ensuring that these families, struggling to come to terms with their child’s diagnosis of a rare chromosome or gene disorder, are able to get the help they so desperately need is, and will remain our top priority. With Covid restrictions now lifted, we are also planning to re-start our face to face events this year and very much hope to meet lots of those families in person, something we have not been able to do for almost three years. Our family events will help them to meet others in the same boat, facing the same day-to-day challenges and establish the sort of informal mutual support networks that can be so valuable.

As the UK’s only charity working in this specific field, we now support over 26,000 families who have a child (and increasingly an adult) born with often severe learning and physical disabilities due to a rare chromosome or gene disorder. We expect the growth in demand will increase steeply as genomics becomes a more significant and mainstream strand of healthcare and diagnostic technology continues to develop. As trustees, we are determined that Unique will continue to be the go-to charity for these families and will work with Sarah, Craig and the team to do all in our power to ensure we strengthen and further develop the service we provide to them.

Helen Campbell, Chair of Trustees

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2022

Our Mission, Aims and Objectives

Unique’s mission is to inform, support and alleviate the isolation of anyone affected by a rare chromosome or gene disorder and to raise public awareness.

Rare Chromosome and Gene Disorders (RCDs) are lifelong conditions, present at birth (though not usually inherited) which cause often severe learning and physical disabilities and complex medical issues. They involve parts of one of more of a person’s chromosomes or single genes being missing, duplicated or rearranged or a change to just one single gene. They are life-limiting and occasionally life-threatening, with many of those affected being reliant on parents and carers for all their needs. Others are affected only mildly, with relatively few symptoms, only finding out they have a condition when trying to conceive or facing distressing issues such as stillbirth or miscarriage.

As technology has advanced rapidly, for example Whole Genome Sequencing (WGS), making it possible to diagnose much smaller genetic changes, many more children (and increasingly adults) are receiving a diagnosis than ever before. The nationally commissioned NHS England’s Genomic Medicine Service was launched in 2019 and is underpinned by seven regional genetics laboratories who are implementing the newly formed National Genetic Test Directory for Rare Inherited Disease. The result of this is increased equity of genetic testing but also increased availability to many more people via a variety of different clinical routes, not solely through clinical genetics. Despite this, even in today’s world of vast genomics and medical knowledge, these conditions remain relatively poorly understood. Having received an often complex, confusing and upsetting diagnosis, parents can be left reeling, with lots of unanswered questions. This is where we come in, helping them to understand and begin to come to terms with the diagnosis and how their child is likely to be affected, answering many of their questions, offering them support and connecting them to others facing similar daily challenges.

Our key aims are to:

▪provide specialist information and support to anyone affected by and dealing with RCDs; ▪help to relieve the isolation of those affected and their families; ▪promote, participate and facilitate medical and other research; and ▪act as an umbrella organisation for all RCDs.

Whilst individually these disorders can be very rare, affecting only a handful of people worldwide (and some even unique), collectively they are much more prevalent, in fact more common than even Down’s Syndrome and autism combined, affecting at least 1 in 200 live-born babies. As a result, everincreasing numbers of families are coming to Unique, desperate for answers and in need of the help that quite often only we can provide.

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2022

Our Activities & Achievements During 2021-22

Our key services can be summarised in three strands: Family Support, Information, and Networking.

1. Family Support

Our key service is Unique’s Listening Ear Telephone and Email helpline, the first point of contact for distressed parents in need of help. With an experienced team, bringing a mixture of qualifications and lived experience, we are able to answer many of their questions, explain complex terminology, go through what the diagnosis means and outline what the future may hold for their child. This sort of accessible, sympathetic, tailored response is invaluable when they are often at their lowest ebb.

Working alongside our Listening Ear team, our Family Support Officer provides a welcome pack of resources and is a mine of information on a great variety of topics relevant to families, for example, local sources of support, benefits, accessing grants and much more. We also link families to others in a similar position via our Family Matching Service. Connecting with a family living with a similar disorder and/or symptoms and daily challenges helps establish crucial support networks. The rarity of these conditions means that without this, families would be highly unlikely to meet another family in the same boat. Some are then able to meet in person and attend our events such as our regional Family Days, bringing families together with geneticists and other involved professionals to learn about genomics and establish informal support networks. These events will re-start and continue as government Covid guidelines allow, with the first planned for autumn 2022.

Our activities and achievements in supporting families this year included:

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2022

2. Provision of Specialist Information

When families first approach us for help, they naturally have lots of questions. Imagine being told your child has a ‘6p25 deletion’ or a ‘1q21.2 microduplication’ for example…. you probably wouldn’t know where to start (unless you had a Biology degree maybe!). Our Unique Information Project is a key way we try to address this. We have now written over 300 family-friendly information guides to specific rare chromosome and gene disorders, a ‘unique’ resource of its type. Using data from Unique member families, combined with information from specialist medical literature and research, all our guides are independently verified by specialist professionals in genomics and related fields who volunteer their time. They are not only used by families but also by doctors and other professionals. As well as covering the medical issues known to be associated with the condition, they cover other topics such as learning, development and behaviour, hugely important to those affected and their families. We are constantly contacted by families telling us they would have been lost without this information.

Alongside the disorder-specific guides are our ‘practical guides’ to relevant topics like communication, sleep, feeding, toileting, challenging behaviour and what to do once you’ve received a diagnosis. All are themes that cut across lots of the conditions we support and therefore affect a huge proportion of our member families.

Our Unique database/patient registry underpins all this. It contains all the data provided by our member families, including medical information together with behavioural, social, educational and developmental issues. The data is provided anonymously to inform researchers, geneticists and other professionals and by our staff to help and guide families and produce our information resources.

Our key activities and achievement this year as part of our work to provide specialist information are:

The increase in the number and scope of the information guides produced this year reflects a commitment by trustees to continue to support and develop this crucial strand of our work. During the year, one of our existing Scientific Communications Officers moved from working part-time hours to a full-time, permanent position, increasing our capacity to produce more of our vital resources.

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2022

We have now contacted more than 3,000 of our member families as our rolling database update programme continues apace, to ensure we have up to date and relevant data. We hold data provided by thousands of member families and professionals and are aiming to contact them all to ensure they are happy for us to retain their information and if so, to provide us with an update on them/their affected family member. They provide crucial data which we use to write and publish our information guides, provide tailored responses to other families in need of our help, assist with clinical and other research and further our collective knowledge of rare chromosome and gene disorders.

3. Networking and Awareness-Raising

Despite huge advances in diagnostic technology and rapidly rising rates of diagnosis, RCDs remain relatively poorly known about or understood. It remains a key strategic aim for us to continue to forge strong working relationships with geneticists and other relevant professionals to ensure those receiving a diagnosis are then able to access the help they need. Many professionals, recognising the value of our work, now routinely refer families to us as a first point of contact. We also work closely with other organisations such as charities and policy-makers raising the profile of Unique and RCDs generally. We are incredibly grateful to the hundreds of professionals who volunteer their time, for example by reading and verifying our information guides, talking to families or helping us to raise awareness in the specialism or in their local area.

Our Family Support Officer continues to work to support our network of over 150 local volunteer contacts, on hand to help signpost families to local services and resources. We reach and network with a large and ever-growing social media audience via Facebook, Instagram and Twitter, a very cost-effective way to promote our work, fundraise and raise awareness. As part of this, we have several secret, private groups for families, providing supportive, moderated environments for private, confidential discussion and to facilitate mutual support networks.

This year, our activities to raise awareness of Unique, our work and rare chromosome & gene disorders have included:

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2022

We work closely with other organisations, in particular Genetic Alliance UK and were instrumental in setting up a coalition of 10 different patient groups to ensure the collective voice of our families was heard during the passage of the Down Syndrome Bill through parliament. We have close links with other organisations such as Beacon, SWAN UK and Gene People and always seek to work with others for the benefit of those who need our help. We also continued to be an active participant in Rare Disease UK’s patient empowerment group meetings, representing Unique families to ensure their perspective and views are heard.

Social networking

We have continued to work hard to grow and develop the different ways we connect with diverse audiences. Our very active presence on social media is reflected in our public Facebook page reaching over 39,000 followers, our Twitter feed over 7,300 followers and our Instagram page having over 5,800 followers. Our regular ‘e-news’ continues to be well-received and in our efforts to be as environmentally conscious as possible, we continue to encourage families to receive our magazine by email rather than by post – and many more do. All these included items covering the main strands of our work: information, networking and support, benefitting families and professionals alike.

As the effects of the pandemic continued to be felt, we again felt it appropriate and proportionate to hold a ‘Rare Chromo Day’ rather than our usual Chromosome Disorder Awareness Week. As ever, a great many families, professionals and others engaged with this, awareness raising and fundraising and we are humbled by their support as always. We were particularly grateful for the expert help of the team at PR Agency Havas Just , who donated lots of time to prepare a variety of digital content around case studies of Unique member families and secured some excellent media coverage. Hopefully in the next year or two we will be able to return to a full awareness week format.

Covid

As life began returning to normal following the pandemic, the Unique office opened again during the year and staff now work a hybrid pattern of office and home working. This helps us promote a safe working environment, giving staff increased peace of mind as well as helping with their mental health. To facilitate this way of working, we have continued to make good use of solutions such as Zoom and Egress, introduced to our working practices during 2020, to ensure staff can work remotely without adversely affecting the service to families.

Partly as a result of the pandemic, the operating environment remains especially uncertain for small charities like Unique. The spiralling cost of living in the UK means that income is likely to be adversely affected for some time yet. In addition, the London Marathon, a significant income generator for us, has been delayed to October 2022 and there remains some reluctance for people to commit to mass participation fundraising events. As trustees, we therefore continue to budget prudently and control costs carefully. The numbers of families needing our help is now returning to pre-Covid levels so the need to protect and further develop our frontline services remains acute.

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2022

Public benefit

The trustees confirm their due regard for the Charity Commission Guidance on Public Benefit in reviewing Unique’s aims, objectives and activities undertaken, planning future strategy and setting policy. As the UK’s only charity working in the specific field of RCDs, throughout this report we detail the ways in which we help beneficiaries, providing specialist information as well as softer support.

The NHS and clinical care more widely are rapidly evolving to include genetic/genomic testing in almost all areas of medicine including neurology, cardiology and even General Practice. Unique works to ensure that there is representation of the public and patient voice by sitting on a number of NHS boards including the NHS Clinical Reference Group for Genomics, the British Society for Genomic Medicine’s Bioethics Committee and the NHS People and Communities Forum.

Infrastructure

The senior management team, (CEO and COO) have continued to work with trustees to ensure Unique’s infrastructure remains fit for purpose and has sufficient capacity. This year we have begun the work, overseen by Trustee James Toop who has a background in IT, to replace our specialist database, which was first developed more than 20 years ago. This is a significant project for the charity but will be crucial in retaining and developing our excellence in service to families. All data is processed in accordance with the Data Protection Act 2018 and General Data Protection Regulation (GDPR) and we benefit greatly from the assistance of a data lawyer who advises us on a pro bono basis.

As our office is now only in use for part of each week, we took the decision to move our server to a secure, off-site location. This further reduces risks to data and other security. We also converted our telephone system to VOIP rather than fixed-line, further facilitating hybrid working by making the transfer of calls to remote locations much easier. This represents a cost saving on our communications infrastructure. Staff work closely with TQS Ltd. (our chosen IT company) to ensure security and other software is fully updated and hardware is fully functioning and well-maintained.

Volunteers

As always, we are extremely grateful to the large number of people who continued to help us during a challenging year. These included:

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2022

Financial Review 2021-22

Income

After another challenging year, our total income for the year is £304,805. Whilst this represents a decrease of around 15% on the previous year, partly due to not receiving the government’s Covid support via furlough grants, we are heartened that fundraising income increased and voluntary income remained stable. In a difficult economic climate, particularly for small charities, with a continued and understandable reluctance from people to sign up to mass fundraising events, we remain touched and very humbled by the numbers of people who did continue to support us in their own way, many of whom while caring for their disabled children.

Unrestricted income was £288,305 (previous year: £316,811), including unrestricted grants of £13,663 which includes Coronavirus Job Retention Scheme grants. Restricted income from grants was £16,500, to be spent on our Jargon Buster project and regional funding for Wales, Surrey and East Midlands. We are fortunate that such a high proportion of our income is unrestricted as this gives us the flexibility to direct funds to those aspects of our work which trustees and senior staff feel will have the greatest impact for beneficiaries.

Expenditure

Our total expenditure for the year is £343,810, an increase of 15% on the previous year, due to our day-to-day operations returning to normal, having been curtailed during the previous year and to increasing our service capacity by increasing the working hours of one of our Scientific Communications Officers. Our healthy reserves during the year meant that we were comfortable in doing this as it brought real benefits to families who need us, despite ending the year with a deficit.

Level of Reserves

It is our policy to hold a minimum level of free reserves equating to four months’ average operating costs for the previous year. Based on expenditure for 2021-22, this equates to minimum reserves of approximately £113,000. This policy is reviewed annually by trustees and updated as necessary.

The outlook for 2022-23 is extremely challenging with a number of macro-economic factors likely to adversely affect our income as a small charity. With inflation currently running in double figures, driven by dramatically increasing energy, fuel and food prices, our members and supporters, many of whom have additional costs due to caring for very disabled children, are likely to feel less able to donate and are likely to raise less when they fundraise. This situation is forecast to continue throughout the coming financial year and beyond.

Accordingly, against this very difficult economic situation and a backdrop of rising demand as health services continue to return to normal after the Covid pandemic, we have budgeted for a significant deficit for 2022-23. This will necessitate drawing on our free reserves to protect our core services and continue to help an ever-increasing number of families. We therefore expect our current free reserves will reduce considerably during the course of the 2022-23 financial year. Trustees will keep this situation under review constantly to enable us to take swift, appropriate action as necessary.

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2022

The Future

Trustees have charged our new CEO Sarah Wynn and Craig Mitchell (COO) with drafting our next operating strategy and this began with an away day for trustees and senior staff, kindly chaired (voluntarily) by former Unique trustee Sally Cohen. As always, our beneficiaries will remain at the heart of this. A new database, the foundation of all we do but particularly important to being able to provide information to families and answers to their many questions, will be crucial, as will reinforcing and further developing our services to those who need us. We expect the new strategy will come into operation during late 2022.

Structure, Governance and Management

The trustees delegate day-to-day management of the charity’s activities to Dr Sarah Wynn, CEO, supported by Craig Mitchell (COO). Unique currently employs ten staff, including the CEO, four of whom are full-time and six part-time. Craig Mitchell (COO) is also Company Secretary.

Corporate and social responsibility and sustainability

Our policy is to seek all members of our communities who may be affected by a RCD irrespective of race, religion, sexuality, marital status or culture. We are an equal opportunity employer. We are members of ‘Breaking Down Barriers’, a network of organisations working to improve the lives of diverse and marginalised communities, so that they have equal access to health services.

We take our responsibilities for the welfare of our staff extremely seriously and staff currently work on a ‘hybrid’ basis, dividing their working time between working from home and the office. As trustees, we believe that this is appropriate to the charity’s needs and those of staff. Sarah Wynn has taken steps to foster and encourage a strong team ethic, for example using WhatsApp for real-time communication and introducing more regular staff meetings. Hybrid working also helps to reduce costs and our carbon footprint. Staff are encouraged to take steps where appropriate to minimise any environmental impacts of our work and we continue to reduce the number of printed materials such as magazines we produce, in favour of communicating digitally with families where possible.

Management of risk

We maintain and regularly review and update Unique’s Risk Register, containing the major financial, operational, reputational and other potential risks to the charity. The CEO and COO take operational responsibility for this, overseen by trustees. A disaster recovery plan is in place, with appropriate contingency plans as operating conditions and/or performance change. The trustees meet formally three times per year, with senior staff present, with the charity’s financial position kept under review at each meeting. Monthly management reports are circulated to all trustees and senior staff.

Compliance and training

We collect a range of sensitive medical and personal data in order to provide our services and are acutely aware of our responsibilities in this area. This year we were hugely grateful to Charlotte Astill and Vinciworks for allowing us access to a range of online training courses on data protection legislation (e.g. GDPR and the Data Protection Act). All staff took the training courses to ensure that all are aware of the law and their individual responsibilities. Our COO has continued to attend workshops provided by organisations such as the Charity Finance Group and ACAS to ensure regulatory compliance. All staff and trustees undergo DBS checks and we continued to engage Carecheck to carry them out.

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2022

We often receive research proposals from professionals, academics and others who request that we share them with member families and we have an Internal Research and Ethics Committee to appraise them. No such proposals are shared without approval from the committee.

Staff performance is kept under ongoing review and all staff also take part in a formal annual appraisal which relates the key responsibilities of their role to Unique’s charitable aims. One aim of doing this is to identify any knowledge gaps or training needs in order that appropriate training can be sourced. Appraisals are undertaken with the staff member’s line manager and a trustee present.

Governance

Unique is an incorporated charity and company limited by guarantee, governed by a Memorandum and Articles of Association. Governance and management structures of the charity are kept under constant review to ensure optimal use of resources. Trustees met three times during the year and corresponded regularly via email and other digital means, particularly to keep financial performance under review. They receive monthly management reports with a narrative to flag any issues.

The charity currently has nine trustees with diverse backgrounds in medicine, the law, business, marketing, finance, accounting, IT, the charity sector and education. New trustees are recruited by advertising as widely as possible and through our own networks and we operate an equal opportunity policy for recruitment of trustees and staff.

Registered members of the company limited by guarantee and others with an interest in Unique were invited to attend the Annual General Meeting which was held in late 2021 via Zoom (with some members present in-person) and are kept informed by the Company Secretary.

Statement of responsibilities of the trustees

The trustees (who are also directors of the charity 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, including Financial Reporting Standard 102: The Financial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practice).

Company law 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 income and expenditure of the charity for that period. In preparing those financial statements the trustees are required to:

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2022

The trustees are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of the charity and which enable them to ensure that the financial statements comply with the Companies Act 2006. The trustees 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.

In so far as the trustees are aware:

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

Members of the charity guarantee to contribute an amount not exceeding £10 to the assets of the charity in the event of winding up. The trustees are members of the charity but this entitles them only to voting rights. The trustees have no beneficial interest in the charity.

Auditors

Godfrey Wilson Limited were re-appointed as auditors to the charitable company during the year and have expressed their willingness to continue in that capacity.

Approved by the trustees on 18 October 2022 and signed on their behalf by

Helen Campbell

Helen Campbell - Trustee (Chair)

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Independent auditors' report

To the members of

Rare Chromosome Disorder Support Group

Opinion

We have audited the financial statements of Rare Chromosome Disorder Support Group (the 'charity') for the year ended 31 March 2022 which comprise the statement of financial activities, balance sheet, statement of cash flows and the related notes to the financial statements, 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:

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 charity in accordance with the ethical requirements that are relevant to our audit of the financial statements in the UK, including the FRC’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 charity'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 this report.

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.

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Independent auditors' report

To the members of

Rare Chromosome Disorder Support Group

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:

Matters on which we are required to report by exception

In the light of the knowledge and understanding of the charity 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:

Responsibilities of the trustees

As explained more fully in the trustees’ responsibilities statement set out in the trustees’ report, the trustees 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 they determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.

In preparing the financial statements, the trustees are responsible for assessing the charity’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 charity or to cease operations, or have no realistic alternative but to do so.

15

Independent auditors' report

To the members of

Rare Chromosome Disorder Support Group

Our 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 procedures we carried out and the extent to which they are capable of detecting irregularities, including fraud, are detailed below:

(1) We obtained an understanding of the legal and regulatory framework that the charity operates in, and assessed the risk of non-compliance with applicable laws and regulations. Throughout the audit, we remained alert to possible indications of non-compliance.

(2) We reviewed the charity’s policies and procedures in relation to:

(3) We inspected the minutes of trustee meetings.

(4) We enquired about any non-routine communication with regulators and reviewed any reports made to them.

(5) We reviewed the financial statement disclosures and assessed their compliance with applicable laws and regulations.

(6) We performed analytical procedures to identify any unusual or unexpected transactions or balances that may indicate a risk of material fraud or error.

(7) We assessed the risk of fraud through management override of controls and carried out procedures to address this risk. Our procedures included:

Because of the inherent limitations of an audit, there is a risk that we will not detect all irregularities, including those leading to a material misstatement in the financial statements or non-compliance with regulation. Irregularities that arise due to fraud can be even harder to detect than those that arise from error as they may involve deliberate concealment or collusion.

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Independent auditors' report

To the members of

Rare Chromosome Disorder Support Group

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 charityʼs members, 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 charityʼs members those matters we are required to state to them in an auditorʼs 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 charityʼs members as a body, for our audit work, for this report, or for the opinions we have formed.

Alison Godfrey

Date: 20 October 2022

Alison Godfrey FCA (Senior Statutory Auditor)

For and on behalf of:

GODFREY WILSON LIMITED

Chartered accountants and statutory auditors 5th Floor Mariner House 62 Prince Street Bristol BS1 4QD

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Rare Chromosome Disorder Support Group

Statement of financial activities (incorporating an income and expenditure account)

For the year ended 31 March 2022

Note
Income from:
Donations and legacies
3
Charitable activities:
Family support services
4
Information and awareness
5
Investments
Total income
Expenditure on:
Raising funds
Charitable activities:
Family support services
Information and awareness
7
8
Reconciliation of funds:
Total funds brought forward
Total funds carried forward
Total expenditure
Net income / (expenditure) and net
movement in funds		 Restricted Unrestricted
£
£
-
277,844
3,250
-
13,250
9,412
-
1,049
16,500
288,305
-
39,714
4,301
176,379
8,981
114,435
13,282
330,528
3,218
(42,223)
17,402
422,500
20,620
380,277		 2022
Total
£
277,844
3,250
22,662
1,049
304,805
39,714
180,680
123,416
343,810
(39,005)
439,902
400,897		 2021
Total
£
307,687
19,186
28,698
1,676
357,247
30,179
165,435
104,071
299,685
57,562
382,340
439,902

All of the above results are derived from continuing activities. There were no other recognised gains or losses other than those stated above. Movements in funds are disclosed in note 17 to the accounts.

18

Rare Chromosome Disorder Support Group

Balance sheet

As at 31 March 2022

Note
Fixed assets
Tangible fixed assets
11
Investments
12
Current assets
Stock
13
Debtors
14
Cash at bank and in hand
Creditors: amounts due within 1 year
15
Net current assets
Net assets
16
Funds
17
Restricted income funds
Unrestricted funds:
General funds
Total charity funds
Designated funds		 £
1,405
16,234
394,606
412,245
16,701		 2022
£
4,653
700
5,353
395,544
400,897
20,620
40,000
340,277
400,897		 2021
£
1,860
700
2,560
1,721
19,797
439,284
460,802
23,460
437,342
439,902
17,402
40,000
382,500
439,902

The financial statements have been prepared in accordance with the special provisions relating to companies subject to the small companies regime within Part 15 of the Companies Act 2006.

Approved by the trustees on 18 October 2022 and signed on their behalf by

Helen Campbell

Helen Campbell - Trustee (Chair)

19

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2022

1. Accounting policies

a) Basis of preparation

The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities in preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019) - (Charities SORP (FRS 102)), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and the Companies Act 2006.

Rare Chromosome Disorder Support Group meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy note(s).

b) Going concern basis of accounting

The accounts have been prepared on the assumption that the charity is able to continue as a going concern, which the trustees consider appropriate having regard to the current level of unrestricted reserves and having considered the potential impact of the current economic environment in the UK and beyond. There are no material uncertainties about the charity's ability to continue as a going concern.

c) Income

Income is recognised when the charity has entitlement to the funds, any performance conditions attached to the item(s) of income have been met, it is probable that the income will be received and the amount can be measured reliably.

Income from grants, whether 'capital' or 'revenue', is recognised when the charity has entitlement to the funds, any performance conditions attached to the grants have been met, it is probable that the income will be received and the amount can be measured reliably.

Income received in advance of provision of an event or contract for services is deferred until criteria for income recognition are met.

For legacies, entitlement is taken as the earlier of the date on which either: the charity is aware that probate has been granted, the estate has been finalised and notification has been made by the executor(s) to the Trust that a distribution will be made, or when a distribution is received from the estate. Receipt of a legacy, in whole or in part, is only considered probable when the amount can be measured reliably and the charity has been notified of the executor's intention to make a distribution. Where legacies have been notified to the charity, or the charity is aware of the granting of probate, and the criteria for income recognition have not been met, then the legacy is treated as a contingent asset and disclosed if material.

20

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2022

1. Accounting policies (continued) d) Donated services and facilities

Donated professional services and donated facilities are recognised as income when the charity has control over the item, any conditions associated with the donated item have been met, the receipt of economic benefit from the use by the charity of the item, is probable and the economic benefit can be measured reliably. In accordance with the Charities SORP (FRS 102), general volunteer time is not recognised.

On receipt, donated professional services and donated facilities are recognised on the basis of the value of the gift to the charity which is the amount the charity would have been willing to pay to obtain services or facilities of equivalent economic benefit on the open market; a corresponding amount is then recognised in expenditure in the period of receipt.

e) Interest receivable

Interest on funds held on deposit is included when receivable and the amount can be measured reliably by the charity: this is normally upon notification of the interest paid or payable by the bank.

f) Funds accounting

Unrestricted funds are available to spend on activities that further any of the purposes of the charity. Designated funds are unrestricted funds of the charity which the trustees have decided at their discretion to set aside to use for a specific purpose. Restricted funds are donations which the donor has specified are to be solely used for particular areas of the charity's work or for specific projects being undertaken by the charity.

g) Expenditure and irrecoverable VAT

Expenditure is recognised once there is a legal or constructive obligation to make a payment to a third party, it is probable that settlement will be required and the amount of the obligation can be measured reliably.

Irrecoverable VAT is charged as a cost against the activity for which the expenditure was incurred.

h) Allocation of support and governance costs

Support costs are those functions that assist the work of the charity but do not directly undertake charitable activities. These costs have been allocated between activities on the following basis, which is an estimate of staff time spent on each activity:

2022 2021
Raising funds 7.5% 6%
Family support services 58.0% 53%
Information and awareness 34.5% 41%

i) Tangible fixed assets

Depreciation is provided at rates calculated to write down the cost of each asset to its estimated residual value over its expected useful life. The depreciation rates in use are as follows:

Computer equipment

4 years straight line

Items of equipment are capitalised where the purchase price exceeds £500.

21

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2022

1. Accounting policies (continued)

j) Fixed asset investments

Investments are stated at market value. The statement of financial activities includes any recognised gains or losses on revaluations and disposals during the year.

k) Stock

Stock is included at the lower of cost or net realisable value.

l) Debtors

Trade and other debtors are recognised at the settlement amount due after any trade discount offered. Prepayments are valued at the amount prepaid net of any trade discounts due.

m) Cash at bank and in hand

Cash at bank and cash 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.

n) Creditors

Creditors and provisions are recognised where the charity has a present obligation resulting from a past event that will probably result in the transfer of funds to a third party and the amount due to settle the obligation can be measured or estimated reliably. Creditors and provisions are normally recognised at their settlement amount after allowing for any trade discounts due.

o) Financial instruments

The charity 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.

p) Foreign currency

Transactions in foreign currencies are translated at rates prevailing at the date of the transaction. Balances denominated in foreign currencies are translated at the rate of exchange prevailing at the year end.

q) Pension costs

The company operates a defined contribution pension scheme for its employees. There are no further liabilities other than that already recognised in the SOFA.

r) Operating leases

Rentals applicable to operating leases where substantially all of the benefits and risks of ownership remain with the lessor are charged against profits on a straight-line basis over the period of the lease.

22

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2022

1. Accounting policies (continued) s) Accounting estimates and key judgements

In the application of the charity's accounting policies, the trustees are required to make judgements, estimates and assumptions about the carrying values of assets and liabilities that are not readily apparent from other sources. The estimates and underlying assumptions are based on historical experience and other factors that are considered to be relevant. Actual results may differ from these estimates.

The estimates and underlying assumptions are reviewed on an ongoing basis. Revisions to accounting estimates are recognised in the period in which the estimate is revised if the revision affects only that period, or in the period of the revision and future periods if the revision affects both current and future periods.

The key sources of estimation uncertainty that have a significant effect on the amounts recognised in the financial statements are depreciation as described in note 1 (i) to the accounts.

2. Prior period comparatives

Income from:
Donations and legacies
Charitable activities
Family support services
Information and awareness
Investments
Total income
Expenditure on:
Raising funds
Charitable activities
Family support services
Information and awareness
Total expenditure
Net income and net movement in funds		 Restricted
£
£
-
307,687
19,186
-
21,250
7,448
-
1,676
40,436
316,811
-
30,179
18,135
147,300
8,198
95,873
26,333
273,352
14,103
43,459
Unrestricted		 2021
Total
£
307,687
19,186
28,698
1,676
357,247
30,179
165,435
104,071
299,685
57,562

23

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2022

3. Donations and legacies

Grants more than £5,000:
Bothwell Charitable Trust
D & J Hunter Charitable Trust
Grants £5,000 or less
Donations from fundraising activities
General donations
Corporate donations
Gift aid
Overseas donations
Gifts in kind
Legacies
Give As You Earn (GAYE)
Coronavirus Job Retention Scheme
Pyramids
DM Thomas Foundation for
Young People		 Restricted
£
£
-
5,000
-
-
-
8,154
-
122,409
-
56,909
-
33,788
-
20,710
-
18,966
-
7,124
-
2,000
-
1,837
-
509
-
438
-
277,844
Unrestricted
-
-		 2022
Total
£
5,000
-
8,154
122,409
56,909
33,788
20,710
18,966
7,124
2,000
1,837
509
438
277,844
-		 2021
Total
£
-
15,000
14,000
100,311
48,964
29,753
17,128
14,144
-
22,000
1,663
38,125
110
6,489
307,687

All income from donations in the prior year was unrestricted.

24

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2022

4. Charitable activities: family support services

Grants £5,000 or less
Grants more than £5,000:
Awards for All		 Restricted
£
£
-
-
3,250
-
3,250
-
Unrestricted		 2022
Total
£
-
3,250
3,250		 2021
Total
£
9,936
9,250
19,186

All income from charitable activities: family support services in the prior year was restricted.

5. Charitable activities: information and awareness

Charitable activities: information and awareness
The Openwork Foundation
Christmas card and merchandise sales
Prior year comparative
The Dewan Foundation Ltd
Christmas card and merchandise sales
Grants more than £5,000:
Grants more than £5,000:
Grants £5,000 or less
Grants £5,000 or less		 Restricted
£
£
10,000
-
3,250
-
-
9,412
13,250
9,412
Restricted
£
£
10,000
-
11,250
-
-
7,448
21,250
7,448
Unrestricted
Unrestricted		 2022
Total
£
10,000
3,250
9,412
22,662
2021
Total
£
10,000
11,250
7,448
28,698

6. Government grants

The charitable company received government grant income in the year under the Coronavirus Job Retention Scheme. The total value of such grants in the period ending 31 March 2022 was £509 (2021: £38,125). There are no unfulfilled conditions or contingencies attaching to these grants in 2021/22.

25

The Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2022

7. Total expenditure

Total expenditure
Advertising
Audit and accountancy
Computer expenses
Depreciation
Insurance
Office costs and rent
Postage and distribution
Printing and design
Project costs
Staff costs (note 9)
Stationery
Subscriptions, licences and charges
Training and other staff costs
Travel and subsistence
Website and database development
Sub-total
Allocation of support and governance costs
Total expenditure		 £
-
-
454
211
-
1,498
252
11
-
25,724
48
7,655
61
15
-
35,929
3,785
39,714
Raising funds		 Family support
£
-
-
5,375
1,630
-
13,374
13,495
6,842
6,164
101,146
566
405
635
317
1,458
151,407
29,273
180,680		 Information and
awareness
£
564
-
2,090
970
-
7,045
1,265
3,795
4,680
79,866
418
4,568
407
69
266
106,003
17,413
123,416		 Support and
governance
£
-
4,140
-
-
2,290
234
-
99
960
42,481
-
13
172
82
-
50,471
(50,471)
-		 2022 Total
£
564
4,140
7,919
2,811
2,290
22,151
15,012
10,747
11,804
249,217
1,032
12,641
1,275
483
1,724
343,810
-
343,810

Governance costs were £6,437 (2021: £6,956).

26

The Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2022

7. Total expenditure (continued) Prior year comparative

Audit and accountancy
Computer expenses
Depreciation
Insurance
Office costs and rent
Postage and distribution
Printing and design
Staff costs (note 9)
Stationery
Subscriptions, licences and charges
Training and other staff costs
Website and database development
Sub-total
Allocation of support and governance costs
Total expenditure		 Raising funds
£
-
392
81
-
850
190
-
22,825
28
3,214
-
15
27,595
2,584
30,179		 Family support
£
-
4,953
747
-
9,709
5,161
4,205
115,628
273
79
-
857
141,612
23,823
165,435		 Information and
awareness
£
-
2,864
582
-
6,114
1,133
2,611
67,834
201
3,806
-
385
85,530
18,541
104,071		 Support and
governance
£
3,900
-
-
2,811
520
26
-
37,433
-
13
245
-
44,948
(44,948)
-		 2021 Total
£
3,900
8,209
1,410
2,811
17,193
6,510
6,816
243,720
502
7,112
245
1,257
299,685
-
299,685

27

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2022

8. Net movement in funds

This is stated after charging:

Depreciation
Trustees' remuneration
Auditors' remuneration
Trustees' reimbursed expenses		 2022
£
2,811
Nil
8
4,140		 2021
£
1,410
Nil
Nil
3,900

One trustee was paid £8 for travel expenses (2021: £Nil).

9. Staff costs and numbers

Staff costs were as follows:

Salaries and wages
Social security costs
Pension contributions		 2022
£
223,962
16,392
8,863
249,217		 2021
£
222,351
13,595
7,774
243,720

No employee earned more than £60,000 during the year (2021: none).

The key management personnel of the charity comprise the trustees, the Chief Executive and the Chief Operating Officer. The total employee benefits comprising gross wages, employer pension contributions and employer NI contributions received by the charity's key management personnel in the period was £99,635 (2021: £78,577). This increased during the year due to voluntary reductions in pay by key management personnel in the prior year to safeguard the charity in the face of financial uncertainty during the Covid pandemic.

Average staff head count
Average full time equivalent		 2022
No.
10
7		 2021
No.
10
7

10. Taxation

The charity is exempt from corporation tax as all its income is charitable and is applied for charitable purposes.

28

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2022

11. Tangible fixed assets

Cost
At 1 April 2021
Additions in year
Disposals in year
At 31 March 2022
Depreciation
At 1 April 2021
Charge for the year
On disposal
At 31 March 2022
Net book value
At 31 March 2022
At 31 March 2021
12. Investments
At 31 March 2022
At 31 March 2021		 £
18,064
5,604
(8,268)
Computer
equipment
15,400
16,204
2,811
(8,268)
10,747
4,653
1,860
Artwork
£
700
700

A Tracey Emin print was donated in 2005. The trustees have no immediate plans to sell the print consequently it has been reported as a fixed asset investment in the accounts. It is valued at the average of two professional valuations which were provided in May 2012. No revaluations were carried out in the year. The trustees are satisfied that the print is carried at an appropriate value at 31 March 2022.

13. Stock

Merchandise 2022
£
1,405		 2021
£
1,721

29

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2022

14. Debtors

Trade debtors
Prepayments
Accrued income
Other debtors		 2022
£
-
9,908
6,326
-
16,234		 2021
£
122
8,798
10,714
163
19,797

15. Creditors : amounts due within 1 year

Trade creditors
Accruals
Other taxation and social security
Pension creditor		 2022
£
80
8,302
5,239
3,080
16,701		 2021
£
-
18,100
4,359
1,001
23,460

16. Analysis of net assets between funds

Tangible fixed assets
Investments
Net current assets
Net assets at 31 March 2022
Prior year comparative		 £
-
-
20,620
20,620
Restricted
funds		 £
-
-
40,000
40,000
Designated
funds		 General
funds
£
4,653
700
334,924
340,277		 Total
funds
£
4,653
700
395,544
400,897
Tangible fixed assets
Investments
Net current assets
Net assets at 31 March 2021		 £
-
-
17,402
17,402
Restricted
funds		 £
-
-
40,000
40,000
Designated
funds		 £
1,860
700
379,940
382,500
General
funds		 £
1,860
700
437,342
Total
funds
439,902

30

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2022

17. Movements in funds

Restricted funds
Family support services
Information and awareness
Unrestricted funds
Designated funds:
Listening Ear Fund
Total designated funds
Total unrestricted funds
Total funds
General funds
Total restricted funds		 At 1 April
2021
£
4,350
13,052
17,402
40,000
40,000
382,500
422,500
439,902		 Income
£
3,250
13,250
16,500
-
-
288,305
288,305
304,805		 £
(4,301)
(8,981)
(13,282)
-
-
(330,528)
(330,528)
(343,810)
Expenditure		 £
3,299
17,321
At 31 March
2022
20,620
40,000
40,000
340,277
380,277
400,897

Purposes of restricted funds

Family support services

This is funding for our frontline services to families such as our Listening Ear telephone and email helpline and Regional Family Days. It includes grants received during the year from a number of funders and other trusts and foundations, kindly helping us to support families in regions across the UK as part of our wider service.

Information and awareness

These funds are provided by a number of charitable trusts and foundations, helping us to continue to increase our library of ‘practical’ information guides for families and supporting our work to provide families with specialist information as part of our wider service.

Purposes of designated funds

Listening Ear Fund

The trustees have designated £40,000 from general funds to the charity's 'Listening Ear' project. This sum is to ensure that the Unique helpline, a frontline service providing expert response to first-time callers from the UK and around the world, would be staffed appropriately for at least part of each UK working day during each year. The fund will be spent if and when general funds are unavailable to cover the cost of running the service.

31

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2022

17. Movements in funds (continued) Prior period comparative

Restricted funds
Family support services
Information and awareness
Unrestricted funds
Designated funds:
Listening Ear Fund
Total designated funds
General funds
Total unrestricted funds
Total funds
Total restricted funds		 At 1 April
2020
£
3,299
-
3,299
40,000
40,000
339,041
379,041
382,340		 Income
£
19,186
21,250
40,436
-
-
316,811
316,811
357,247		 £
(18,135)
(8,198)
(26,333)
-
-
(273,352)
(273,352)
(299,685)
Expenditure		 £
4,350
13,052
At 31 March
2021
17,402
40,000
40,000
382,500
422,500
439,902

18. Related party transactions

There were no related party transactions during the year ended 31 March 2022, or the prior year.

19. Financial instruments held at fair value

Financial assets measured at fair value
Financial assets measured at fair value comprise investment assets.		 2022
£
700		 2021
£
700

32