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2023-03-31-accounts

Company no. 05460413 Charity no. 1110661

Rare Chromosome Disorder Support Group Report and Unaudited Financial Statements 31 March 2023

Rare Chromosome Disorder Support Group

Contents

For the year ended 31 March 2023

For the year ended 31 March 2023
Page
Reference and administrative details 1 - 2
Report of the trustees 3 - 12
Independent examiners’ report 13
Statement of financial activities 14
Balance sheet 15 - 16
Notes to the financial statements 17 - 29

Rare Chromosome Disorder Support Group

Reference and administrative details

For the year ended 31 March 2023 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 until 17 October 2022 Isobel Hindle Trustee Edna Knight, MBE Founder, Life President, Trustee Gillian Manvell Trustee Shwetha Ramachandrappa Trustee Sophie Sainty Chair from 18 October 2022 Benjamin Stern Trustee James Toop Trustee Fiona de Zoete Trustee Chief executive officer Dr Sarah Wynn 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 2023

For theyear ended 31 March 2023
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
Independent Godfrey Wilson Limited
examiners 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 2023

Welcome to Unique’s annual report and accounts for the year ended 31 March 2023 and thank you for your interest in our work.

As a small charity, this is an incredibly challenging time, with a squeeze on our income, accompanied by the steep rises in costs that we are all experiencing. At the same time, we are attempting to serve an ever-increasing number of families in real need of our help and support. Having entrusted the leadership of the charity to Dr. Sarah Wynn as CEO, with Craig Mitchell supporting her as COO, we are hugely proud of the way the team has met these challenges head on and continue to provide families with the same excellence in service provision that has become our hallmark. Between April 2022 and March 2023, we saw a 10% increase in the numbers coming to us, welcoming and helping over 2,150 new families. This takes the total supported to over 28,000 families, representing more than 30,000 affected individuals.

A real highlight this year was running our first in-person event since the pandemic, a family day in Exeter attended by lots of families from across the South West, as well as local professionals. Networking in this way is so important to families who can otherwise find themselves feeling very isolated. One parent told us they had “learnt more in three hours than in the three years since the diagnosis.” During the coming year, we are planning three more in-person events for families and professionals and are hugely grateful to the Royal Society of Medicine who are hosting one of these events, planned for October 2023.

Given the bleak wider economic and charity sector forecasts, we prepared a worst-case scenario budget which we kept under constant review during the year to carefully control our expenditure. Our income for the year was disappointing, down by around 5%, following on from the previous already tight year. We made use of some of our reserves to protect Unique’s key services but towards the end of the financial year, having reviewed our entire cost base, and given the reduction in income, we took the extremely difficult decision to consider reducing staff headcount. Whilst we are very mindful that as a support organisation our staff are at the centre of all our work, as Trustees we must also ensure the charity’s long-term sustainability so we can continue to serve our beneficiaries. Towards the end of the financial year, after taking advice and after appropriate consultation, with a heavy heart we began the redundancy consultation process with staff. We aim to conclude this in April 2023. We have also taken the decision to work with a specialist consultant trust fundraiser to increase our fundraising efforts to specifically target larger grants. We will continue to keep our costs closely under review throughout 2023-24 but we believe that these steps will put us on the path to grow to meet the ever-increasing numbers of families affected by rare chromosome and gene disorders.

A key aim for the next year is to launch our new database. The cornerstone of much of our work, used to inform families and professionals alike about many hundreds of different rare chromosome and gene disorders, this is a crucial piece of work. Much of the groundwork for this has been done, overseen by James Toop, our trustee with responsibility for IT and we are confident it will bring huge gains in terms of efficiency of working and developments to our frontline services. We will also further develop our offering to the growing number of families who come to us having received a diagnosis during pregnancy and naturally have lots of questions. We are also expanding our information resources to include Easy Read guides aimed at our members who have a learning disability or who have difficulty processing information. The Easy Read adapted format uses pictures, simple language and larger font to help older children and adults understand more about their own condition.

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2023

We are confident that the actions we have taken this year and the plans we have in place, together with our strong working relationships with a great many professionals and our dedicated, professional staff team mean that Unique continues to be in a very strong position to weather the current macroeconomic challenges and serve all those needing our help and support.

Sophie Sainty, Chair of Trustees

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.

New technology, e.g. ‘Whole Genome Sequencing’ which is now part of routine clinical practice, makes it possible to diagnose much smaller changes, e.g. in just one gene. As a result, many more children (and adults) are receiving a diagnosis. At least 1 in 200 babies is born with a rare chromosome or gene disorder, and whilst knowledge and understanding have grown considerably, the rarity of the individual conditions we support means they remain relatively poorly understood. Parents often receive a complex, confusing diagnosis with little information and are left devastated, with a great many unanswered questions.

At Unique we aim to help them understand and begin to come to terms with the diagnosis and how their child is likely to be affected. We – and often we alone – can provide answers to many of their questions and connect them to other families facing similar daily challenges. We do this by:

As ever-increasing numbers of families come to us desperate for answers, we want them to feel better supported, less isolated and able to face the future with hope, confident that they will be able to care for their disabled child.

Our Activities & Achievements During 2022-23

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

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2023

1. Family Support

Our key service to families is Unique’s Listening Ear Telephone and Email helpline , the first point of contact for distressed parents in need of help. Our experienced Information Officers are able to answer many of their questions, explain complex terminology, take them through what the diagnosis means and outline what the future may hold for their child in terms of the disabilities, health issues and other challenges they will face. At their lowest ebb, families tell us they greatly value being able to talk this through with someone understanding, empathetic and knowledgeable.

Families receive a tailored response, including information about their child’s specific condition and a welcome pack of resources and we link them to other families via our Family Matching Service . Contact with others who have a family member with a similar condition and/or symptoms is crucial to overcoming feelings of isolation and establishing support networks. Individual conditions can be very rare, so without this families seldom meet another family in the same position. We also facilitate these links through events such as our Family Days across the UK, bringing lots of families together with geneticists and other professionals.

Under the Family Support strand of our work, our activities and achievements this year included:

2. Provision of Specialist Information

Access to reliable information is crucial in overcoming the initial shock of receiving the diagnosis. One parent likened being told their child has a rare chromosome disorder to a “sledgehammer blow” and this can be compounded when they are also told it is a very rare condition, about which there is little knowledge. There is often no recognised care pathway as with other, better-known conditions.

Our Unique Information Project seeks to address this, producing family-friendly and independently medically verified guides to specific conditions. We have now produced over 300 such guides, giving families and professionals reliable, accurate information not otherwise available. They are based on information from Unique member families and also draw on carefully researched data from medical literature. Prior to publication, they are verified by geneticists or paediatricians who are the world expert on the specific condition who volunteer their time. Each one covers the medical issues associated with the condition but also topics such as learning, development and behaviour and families and professionals alike regularly tell us how incredibly valuable they find them.

During the year we also reached the milestone of publishing the 30th of our ‘practical guides' . These sit alongside our condition-specific guides, covering topics of relevance to many families regardless of their child’s condition. Topics include communication, sleep, toileting and dental issues and this year we published our guide to Hearing Loss. This will benefit lots of children born with a diverse range of rare chromosome disorders who are affected by hearing loss, from mild to moderate, to full deafness.

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2023

To produce all this tailored information, we collect data from families in our Unique database . Each family’s entry contains medical information for their child together with behavioural, social, educational and developmental issues affecting them. As well as informing families, this can then be used in anonymised form to assist researchers, geneticists and other professionals.

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

Our two Scientific Communications Officers (one full-time and one part-time) continue to work incredibly hard to meet demand from families for tangible, reliable resources. Being able to give families these resources is incredibly valuable in helping them come to terms with their diagnosis and we are committed to produce as many information guides as possible over the next year.

Our ongoing Data Update Programme also continued apace as we work to ensure we have up to date and relevant data for all our member families. Their data is used to write and publish our information guides, provide tailored responses to families in need of our help, assist with clinical and other research and further our collective knowledge of rare chromosome and gene disorders.

We also facilitate and are involved in research projects wherever possible. Two of our team are coauthors on a publication in The Lancet looking at children with intellectual disability with an underlying genetic cause. Other studies we are involved in include GENROC, looking at 500 children with single gene disorders with the aim of improving clinical predictions for them.

3. Networking and Awareness-Raising

Rare chromosome and gene disorders affect at least 1 in 200 babies, with rates of diagnosis rapidly increasing, yet they remain relatively poorly understood. Individually, many of the disorders are incredibly rare so networking to raise awareness is a key aim for us. We have continued to build on our already strong working relationships with geneticists and other relevant professionals, many of whom refer families to us as a first point of contact, demonstrating their trust in us. We also work closely with other charities and policy-makers to raise the profile and awareness of these disorders. Hundreds of professionals have given their time freely and we are extremely grateful to them all, particularly for verifying our information resources which are so important to families.

We network with a large and ever-growing social media audience via Facebook, Instagram and Twitter, a cost-effective way to raise awareness and also fundraise. An integral part of this is our secret, private group for families; a safe, moderated environment for confidential discussions and mutual support.

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2023

As part of our networking and awareness raising activities this year, the Unique team have attended over 25 meetings and conferences and given 29 presentations, including:

Our staff sit on a variety of high level advisory boards, including the NHS Genomics Clinical Reference Group, Rare Disease UK’s Patient Empowerment Group, England Rare Diseases Action Plan’s Patient Advisory Group and University of London’s ENRICH study. We have close working links with other organisations such as Genetic Alliance UK, Beacon for Rare Diseases, SWAN UK and Gene People. All are undertaken for the benefit of those who need our help.

Social media

For a small charity, social media is a cost-effective way to reach a large and diverse audience. Our public Facebook page has over 41,000 followers, our Twitter feed over 7,500 followers and our Instagram page over 7,000. Whilst we do not pay for advertising, each strand continues to grow rapidly, reflecting our ongoing efforts to raise awareness about our work with regular posts, stories and case studies. We encourage members and supporters to receive our magazine by email rather than by post, as an environmentally-friendly and cheaper option for the charity and our regular email newsletters continue to receive positive open and click-through rates.

With limited resources, we feel it is proportionate to hold a ‘Rare Chromo Day’ and not a full week as in the past. We selected June 16th as a day on which we aimed to ‘celebrate, educate and inform’. Supporters undertook our new ‘Unique23’ challenge, an inclusive challenge asking supporters to do 23 different activities, regardless of their ability level. We were thrilled to see our member families and their children getting behind it. A number of parents and professionals also gave presentations, wore blue and yellow, held cake sales and coffee mornings or gave out leaflets, all helping to raise awareness. The NHS Genomics unit also ran an awareness campaign creating content for social media including a video clip from Dame Professor Sue Hill, Chief Scientific Officer for England.

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2023

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.

We also continue 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. As clinical care is rapidly evolving to include genetic/genomic testing in almost all areas of medicine, it is vital that our beneficiary group continues to be fully represented and heard.

Hybrid Working & Unique’s Infrastructure

Unique maintains a small office base in Surrey and staff work a hybrid pattern of office and home working. Regular face to face contact between staff is important but this also promotes a positive work-life balance and mental health, whilst also helping to reduce costs and our carbon footprint. We continue to monitor productivity closely, ensuring beneficiaries continue to receive the excellent service that is our hallmark. We are grateful to our IT providers TQS Ltd. whose continued flexibility and responsiveness enables us to work in this way. They continue to advise staff to ensure operating software and working practices are up to date and secure.

A crucial need is to replace our specialist database, which is now over 20 years old. Much of the groundwork and scoping for this is complete, with a sub-committee including two trustees plus the CEO and COO and we aim for this project to be completed during the coming year. Confidentiality and data security are paramount and all data are processed in accordance with the Data Protection Act 2018 and General Data Protection Regulation (GDPR) and we benefitted greatly from the assistance of a data lawyer who advised us on a pro bono basis in the previous year.

Volunteers

A large number of people helped us voluntarily during the year and we are hugely grateful to each and every one of them. They included:

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2023

Financial Review 2022-23

Income

This proved to be another challenging year for Unique, with a reduction in income of around 5% to £289,143. As many of our supporters are families caring for disabled children, they really felt the pinch this year with the cost-of-living crisis a significant factor. As a result, we saw a fall in voluntary donations of more than 30%, to just under £95,000. However, we were able to balance this somewhat as fundraising income remained stable and we were able to double our income from grants, to just over £60,000. As always, we are very touched by the numbers of people supporting us many of whom while caring for children with rare chromosome and gene disorders.

Unrestricted income was £246,064 (previous year: £288,305), including unrestricted grants of £21,500. Restricted income from grants plus funds raised by the CEO and COO running the Royal Parks Half Marathon was £43,079, to be spent on Regional Activities, Devon Family Day, Easy Read Guides, East & West Midlands Family Days, Helpline & Information/Awareness. We are fortunate that 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

Total expenditure for the year was £382,563, an increase of around 12% on the previous year. Our relatively healthy reserves during the year meant that we could sustain this, to protect our frontline services which continued to return to more normal levels of demand after the pandemic. Despite therefore ending the year with a deficit of £93,420, protecting our services brought real benefits to families, many of whom were in desperate need of help having received a diagnosis for their child.

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 2022-23, this equates to minimum reserves of approximately £127,000. As it seems likely that the prevailing macro-economic situation, including the ongoing cost of living crisis, will continue into 2023-24, we have again budgeted for a deficit and expect our current free reserves to reduce further during the year. Our reserves policy is reviewed annually and updated as necessary.

The Future

During the process of reviewing our cost base to prepare a budget for 2023-24, in March 2023 we held an extraordinary meeting of the Trustees at which several cost saving proposals were discussed. These included a proposal to reduce our staff headcount which, if agreed, will potentially result in one or more staff being made redundant. We have begun the consultation process, assisted at every step by Primed HR, our retained HR and Employment Law advisers, to ensure fairness and transparency throughout the process. As ever, protecting our key services to those who need us will remain at the heart of all decisions we take, not least because some of the trustees and staff have in the past been beneficiaries themselves, having their own affected children.

This year, in addition to launching the new database described elsewhere in this report, we aim to develop and implement a new social media strategy to capitalise on the strong base that we have in this area. With a large and growing audience, this is crucial to helping people find us and access the information and support they need.

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2023

Structure, Governance and Management

The Trustees delegate the charity’s day-to-day management to Dr Sarah Wynn, CEO, supported by Craig Mitchell (COO). At the end of March 2023, Unique 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

We welcome and help all members of our communities who may be affected by a RCD, irrespective of their background in terms of race, religion, sexuality, marital status or culture. We are proud to be 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 are an equal opportunity employer and take our responsibilities for the welfare of our staff extremely seriously. As CEO, Sarah Wynn has continued to foster and encourage a strong team ethic, with regular communication and regular staff meetings, both virtual and in-person. 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. 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.

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.

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2023

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 Autumn 2022 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:

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.

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.

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Rare Chromosome Disorder Support Group

Report of the trustees

For the year ended 31 March 2023

Independent examiners

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

Approved by the trustees on 10 October 2023 and signed on their behalf by

Sophie Sainty- Trustee (Chair)

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Independent examiner's report

To the trustees of

Rare Chromosome Disorder Support Group

I report to the trustees on my examination of the accounts of Rare Chromosome Disorder Support Group (the charitable company) for the year ended 31 March 2023, which are set out on pages 14 to 29.

Responsibilities and basis of report

As the trustees of the charitable company (and also its directors for the purposes of company law) you are responsible for the preparation of the accounts in accordance with the requirements of the Companies Act 2006 (‘the 2006 Act’).

Having satisfied myself that the accounts of the charitable company are not required to be audited under Part 16 of the 2006 Act and are eligible for independent examination, I report in respect of my examination of the charitable company's accounts as carried out under section 145 of the Charities Act 2011 (‘the 2011 Act’). In carrying out my examination I have followed the Directions given by the Charity Commission under section 145(5) (b) of the 2011 Act.

Independent examiner’s statement

Since the charitable company’s gross income exceeded £250,000 your examiner must be a member of a body listed in section 145 of the 2011 Act. I confirm that I am qualified to undertake the examination because I am a member of the Institute of Chartered Accountants in England and Wales (ICAEW), which is one of the listed bodies.

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

I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached.

Date: 10 October 2023 Alison Godfrey FCA Member of the ICAEW 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 2023

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
Net gains on investment
12
Net movement in funds
8
Reconciliation of funds:
Total funds brought forward
Total funds carried forward
Total expenditure
Net income / (expenditure)		 Restricted Unrestricted
£
£
4,225
229,027
23,327
-
15,527
14,752
-
2,285
43,079
246,064
-
48,376
16,681
167,329
30,628
119,549
47,309
335,254
(4,230)
(89,190)
-
3,300
(4,230)
(85,890)
20,620
380,277
16,390
294,387		 2023
Total
£
233,252
23,327
30,279
2,285
289,143
48,376
184,010
150,177
382,563
(93,420)
3,300
(90,120)
400,897
310,777		 2022
Total
£
277,844
3,250
22,662
1,049
304,805
39,714
180,680
123,416
343,810
(39,005)
-
(39,005)
439,902
400,897

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.

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Rare Chromosome Disorder Support Group

Balance sheet

As at 31 March 2023

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		 £
2,794
11,769
307,847
322,410
18,435		 2023
£
2,802
4,000
6,802
303,975
310,777
16,390
40,000
254,387
310,777		 2022
£
4,653
700
5,353
1,405
16,234
394,606
412,245
16,701
395,544
400,897
20,620
40,000
340,277
400,897

The directors are satisfied that the company is entitled to exemption from the provisions of the Companies Act 2006 (the Act) relating to the audit of the financial statements for the year by virtue of section 477(2), and that no member or members have requested an audit pursuant to section 476 of the Act.

The directors acknowledge their responsibilities for:

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Rare Chromosome Disorder Support Group

Balance sheet

As at 31 March 2023

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 10 October 2023 and signed on their behalf by

Sophie Sainty- Trustee (Chair)

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Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2023

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.

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Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2023

1. Accounting policies (continued)

d) Donated services and facilities

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

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:

2023 2022
Raising funds 9.0% 7.5%
Family support services 51.0% 58.0%
Information and awareness 40.0% 34.5%

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.

18

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2023

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.

19

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2023

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 / (expenditure) and net movement in
funds		 Restricted
£
£
-
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)
Unrestricted		 2022
Total
£
277,844
3,250
22,662
1,049
304,805
39,714
180,680
123,416
343,810
(39,005)

20

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2023

3. Donations and legacies

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		 Restricted
£
£
-
-
-
10,000
-
11,500
-
121,153
4,225
34,707
-
17,108
-
21,510
-
10,920
-
-
-
-
-
1,697
-
-
-
432
4,225
229,027
Unrestricted		 2023
Total
£
-
10,000
11,500
121,153
38,932
17,108
21,510
10,920
-
-
1,697
-
432
233,252		 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

All income from donations in the prior year was unrestricted.

21

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2023

4. Charitable activities: family support services

Grants £5,000 or less
Grants more than £5,000:
Pears Foundation		 Restricted
£
£
8,500
-
14,827
-
23,327
-
Unrestricted		 2023
Total
£
8,500
14,827
23,327		 2022
Total
£
-
3,250
3,250

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
Christmas card and merchandise sales
Conference fees
Prior year comparative
The Openwork Foundation
Christmas card and merchandise sales
Grants more than £5,000:
Grants £5,000 or less
Grants £5,000 or less		 Restricted
£
£
15,527
-
-
10,424
-
4,328
15,527
14,752
Restricted
£
£
10,000
-
3,250
-
-
9,412
13,250
9,412
Unrestricted
Unrestricted		 2023
Total
£
15,527
10,424
4,328
30,279
2022
Total
£
10,000
3,250
9,412
22,662

6. Government grants

In the prior year the charitable company received government grant income in the year under the Coronavirus Job Retention Scheme. The total value of such grants was £509. There were no unfulfilled conditions or contingencies attaching to these grants.

22

The Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2023

7. Total expenditure

Total expenditure
Independent examination and accountancy
Computer expenses
Depreciation
Event costs
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		 £
-
647
167
-
-
2,139
270
16
-
29,760
61
10,515
4
45
-
43,624
4,752
48,376
Raising funds		 Family support
£
-
5,134
944
4,838
-
12,159
4,430
3,320
-
123,856
540
338
185
506
834
157,084
26,926
184,010		 Information and
awareness
£
-
2,905
740
-
-
8,455
6,257
201
10,320
94,454
354
4,898
19
152
304
129,059
21,118
150,177		 Support and
governance
£
2,520
-
-
-
2,381
312
-
-
-
46,376
-
1,117
90
-
-
52,796
(52,796)
-		 2023 Total
£
2,520
8,686
1,851
4,838
2,381
23,065
10,957
3,537
10,320
294,446
955
16,868
298
703
1,138
382,563
-
382,563

Governance costs were £4,420 (2022: £6,437).

23

The Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2023

7. Total expenditure (continued) Prior year comparative

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		 Raising funds
£
-
-
454
211
-
1,498
252
11
-
25,724
48
7,655
61
15
-
35,929
3,785
39,714		 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

24

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2023

8. Net movement in funds

This is stated after charging:

Depreciation
Trustees' remuneration
Auditors' remuneration
Independent examiners' remuneration
Trustees' reimbursed expenses		 2023
£
1,851
Nil
Nil
Nil
2,520		 2022
£
2,811
Nil
8
4,140
Nil

No trustees were reimbursed for expenses in the current year. In the prior year one trustee was reimbursed for travel expenses of £8.

9. Staff costs and numbers

Staff costs were as follows:

Salaries and wages
Social security costs
Pension contributions		 2023
£
263,937
20,372
10,137
294,446		 2022
£
223,962
16,392
8,863
249,217

No employee earned more than £60,000 during the year (2022: 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 £114,857 (2022: £99,635).

Average staff head count
Average full time equivalent		 2023
No.
10
7		 2022
No.
10
7

10. Taxation

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

25

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2023

11. Tangible fixed assets

Cost
At 1 April 2022 and at 31 March 2023
Depreciation
At 1 April 2022
Charge for the year
At 31 March 2023
Net book value
At 31 March 2023
At 31 March 2022
12. Investments
At 1 April 2022
Gain on revaluation
At 31 March 2023		 £
15,400
Computer
equipment
10,747
1,851
12,598
2,802
4,653
Artwork
£
700
3,300
4,000

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 was revalued during the year based on the sale of a similar work by the artist. The trustees are satisfied that the print is carried at an appropriate value at 31 March 2023.

13. Stock
Merchandise		 2023
£
2,794		 2022
£
1,405

26

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2023

14. Debtors

Trade debtors
Prepayments
Accrued income		 2023
£
290
7,243
4,236
11,769		 2022
£
-
9,908
6,326
16,234

15. Creditors : amounts due within 1 year

Creditors : amounts due within 1 year
Trade creditors
Accruals
Other taxation and social security
Pension creditor		 2023
£
274
8,353
5,482
4,326
18,435		 2022
£
80
8,302
5,239
3,080
16,701

16. Analysis of net assets between funds

Tangible fixed assets
Investments
Net current assets
Net assets at 31 March 2023
Prior year comparative
Tangible fixed assets
Investments
Net current assets
Net assets at 31 March 2022		 £
-
-
16,390
16,390
£
-
-
20,620
20,620
Restricted
funds
Restricted
funds		 £
-
-
40,000
40,000
£
-
-
40,000
40,000
Designated
funds
Designated
funds		 General
funds
£
2,802
4,000
247,585
254,387
£
4,653
700
334,924
340,277
General
funds		 Total
funds
£
2,802
4,000
303,975
310,777
£
4,653
700
395,544
Total
funds
400,897

27

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2023

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
2022
£
3,299
17,321
20,620
40,000
40,000
340,277
380,277
400,897		 Income
£
23,327
19,752
43,079
-
-
246,064
246,064
289,143		 £
(16,681)
(30,628)
(47,309)
-
-
(335,254)
(335,254)
(382,563)
Expenditure		 £
-
-
-
-
-
3,300
3,300
3,300
Gain on
investments		 £
9,945
6,445
At 31 March
2023
16,390
40,000
40,000
254,387
294,387
310,777

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.

28

Rare Chromosome Disorder Support Group

Notes to the financial statements

For the year ended 31 March 2023

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
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

18. Related party transactions

There were no related party transactions during the current or prior year.

19. Financial instruments held at fair value

2023 2022
£ £
Financial assets measured at fair value 4,000 700

Financial assets measured at fair value comprise investment assets.

29