2021-03-31-accounts

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GENETIC ALLIANCE UK Report of the Board of Trustees and Accounts 2020-2021

Genetic Alliance UK ltd

REPORT OF THE BOARD OF TRUSTEES For the year ended 31 March 2021

The trustees who are also directors of the charity for the purposes of the Companies Act 2006, present their report with the financial statements of the charity for the year ended 31 March 2021. The trustees have adopted the provisions of the Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2015) and the Companies Act 2016.

3 Welcome from the chair
4 Objectives and aims
4 Terminology we use
5 Impact of Covid-19
6 Driving progress
6 Policy and public affairs
7 Wales
9 Scotland
11 Research
14 Making the voice of our community heard
15 Building greater awareness
17 Rare Disease Day 2021
20 Rare Reach Festival
21 Building our community
27 Building our organisation
28 The coming year
29 Treasurer’s letter and financial review
30 Reference and administrative detail
31 Structure, governance and management
32 Trustee responsibility
33 Independent auditor’s report to the members of Genetic Alliance UK
36 Statement of financial activities including income and expenditure account
37 Balance sheet
38 Cash flow statement
39 Notes to the financial statements
21 Working with our members
22 New members
23 Rare Resources – Scotland
25 SWAN UK

Genetic Alliance UK

contactus@geneticalliance.org.uk geneticalliance.org.uk Registered charity numbers: 1114195 and SC039299 Registered company number: 05772999

Genetic Alliance UK ltd

WELCOME FROM THE CHAIR

If I may, I will begin by thanking everyone for their hard work in what has been a tumultuous year for everyone — in our case, for our members, our communities, our team and the Board of Genetic Alliance UK. Tumultuous yes, but also enlightening and, I’m particularly glad to say, successful. Covid-19 has undoubtedly severely impacted on all of us in one or more ways. At the same time, it has led us to look at new ways of working, both within the organisation and with our members and their families throughout the land. Our weekly Community check-ins have proven to be valuable to many in our community and such has been the success of their collaborative approach that we will continue with them, working with, and keeping in touch, with what matters to you – our families and carers.

however that in the few months she was with us, she undertook a robust review of fundraising and generated a new strategy which is now being pursued.

The Genetic Alliance UK Board has also taken the opportunity to look at how we work together and consider our governance responsibilities and arrangements to ensure we keep pace with, and meet, the expectations of the Charities Commissions in England and Wales and Scotland. This work is ongoing but has led to what we hope will be improved information and support for Trustees in the future. There is no doubt that remote working has brought with it some challenges and we are all looking forward to a time, hopefully soon, when we might be able to meet again in person.

It also gives me great pleasure to look forward to working with the four administrations across the UK as they work towards implementation of the new Rare Disease Strategy launched in February. This, and the launch of Genome UK, are particular highlights in what we hope will be new and exciting opportunities for everyone affected by rare, genetic and/or undiagnosed conditions to seek and see ongoing improvements in diagnosis, treatment and care.

It is unfortunate that some of our public affairs activities were necessarily truncated this year, largely due to most of our team being on furlough for several months. For those team members who remained, the road has been long and hard. That we have succeeded in so many areas is due to their unstinting efforts, for which I and the rest of the Board are enormously grateful.

As we look over the year it is with hopes of continued success in meeting the challenges faced not only by us, but most charities, as we all look to the future in a new light, living with and, hopefully, post Covid-19.

There have also been challenges with fundraising and with the departure of our Chief Executive, Jayne Spink, at the end of March. To allow time for consolidation and stability in what was already a turbulent time, the board decided to appoint two joint interim chief executives, Nick Meade, Director of Policy and Lauren Roberts, Director of Engagement and Support, rather than proceed immediately to appoint a new CEO. This arrangement is ongoing and the Board will consider when and how best to fulfil the CEO role in the light of experience.

I commend this annual report to you, which is possible only through the work of the Genetic Alliance UK team and built on the experiences and hopes of families and carers throughout the UK.

As far as fundraising is concerned, this continues to be a challenging area. Having succeeded in appointing a Director of Fundraising toward the end of the year, unfortunately personal circumstances meant that the postholder had to resign within a short time. It is to her credit

Elizabeth Porterfield Chair, Board of Trustees Genetic Alliance UK

Genetic Alliance UK ltd

OBJECTIVES AND AIMS

Genetic Alliance UK is the national charity working to improve the lives of patients and families affected by genetic, rare and undiagnosed conditions. We are an alliance of over 200 patient organisations.

The objectives of the charity are to:

Relieve persons affected by a genetic and/or rare and/or undiagnosed condition(s);
Advance the education of the public concerning genetic and/or rare and/or undiagnosed conditions in such ways as the trustees of the charity think fit.

We advocate for fast and accurate diagnosis, good quality care and access to the best treatments. We actively support progress in research and engage with decision makers and the public about the challenges faced by our community.

Public benefit

The Board of Trustees confirm they have had regard to the Charity Commission’s guidance on public benefit and have complied with their duty under section 4 of the Charities Act 2011 when reviewing the charity’s aims and objectives; and in implementing current and planning future activities.

TERMINOLOGY WE USE

A word about our terminology:

Genetic, rare and undiagnosed

We support people with genetic, rare and undiagnosed conditions. Sometimes our work might focus particularly on a subset of these groups, such as with our SWAN UK (syndromes without a name) support network for families with children with undiagnosed conditions.

A genetic condition is one that is caused by a change in an individual’s genome. (A genome is your complete set of genetic instructions. Each genome contains all of the information needed to build you and allow you to grow and develop.) The change might be a single letter of the DNA code added, deleted or rearranged, or a much bigger change with more of the genome added, deleted or rearranged.

A rare condition is one that affects fewer than 1 in 2,000 people in the UK. Almost all genetic conditions are rare. There are a handful of genetic conditions that are not rare, we support people with these conditions too. About 72% of rare conditions are genetic. We expect this proportion to grow with progress in genomic research. We support everyone living with a rare condition.

A syndrome without a name or undiagnosed genetic condition is a genetic condition that has not been diagnosed yet. This might be because the right test has not been carried out to make the diagnosis yet, or because the particular genetic cause of the condition has not been discovered yet. We support all families with children with undiagnosed genetic conditions.

Condition and disease

We prefer to use the term ‘condition’ as much as possible. This is because our members and the people they support prefer it. ‘Disease’ and ‘condition’ are technically interchangeable terms, but ‘disease’ has more negative connotations and for some implies that the condition might be contagious. We do have to use the term ‘disease’ sometimes, this is because the term ‘rare disease’ has a lot of traction at policy level. We named our campaign Rare Disease UK accordingly, and key UK policies such as the outgoing UK Strategy for Rare Diseases and the UK Rare Diseases Framework also use the term.

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IMPACT OF COVID-19

COMMUNITY SUPPORT PROGRAMME

In response to the pandemic we quickly initiated new activities to support the whole genetic, rare and undiagnosed community. This included developing a new information hub that was updated regularly and signposted to condition specific information, and holding a weekly virtual Community check-in for organisations to work together to share information and ideas. As a result of these sessions we were able to quickly identify and proactively respond to a number of issues facing our community.

These included alerting NICE to problems with the use of the clinical frailty score for people with rare conditions, working with WellChild to resolve issues around getting children with rare conditions back to school due to the aerosol generating procedures guidance, and successfully campaigning for people affected by rare conditions to be on the priority list for Covid-19 vaccinations .

45 virtual community check-ins hosted
Attended by 325 individuals
150 organisations represented
16K users visited our Covid-19 information hub
Information hub pages viewed over 38K times

THE RARE REALITY OF COVID-19

The pandemic caused sudden and, for many in our community, devastating changes to their lives.

Key findings from the Rare Reality of Covid-19 report:

66% felt their healthcare disruptions were detrimental to their wellbeing
40% reported closure of their hospital units
20% of people had access to their medication disrupted
40% feared Covid-19 posed a high threat to their health

pressure by the pandemic. Access to appropriate support, information, care and treatments had become more difficult and levels of social isolation had increased.

The report was shared with parliamentarians from the All Party Parliamentary Group (APPG) and Cross Party Groups (CPGs) on Rare, Genetic and Undiagnosed Conditions in Westminster, Wales and Scotland. On the same day, the report was attached to a letter to the Secretary of State for Health and Social Care and the minister responsible for rare diseases in England with two clear immediate asks: a risk assessment tool for Covid-19 and people with rare conditions to assist future shielding messaging; and an examination of telemedicine during the crisis period, to ensure best practice is maintained while services are restored.

The report was also promoted at the CPGs in Scotland and Wales and in the November 2020: APPG meeting on Covid-19 that focussed on the impact of Covid-19 on the rare, genetic and undiagnosed community. Over 80 people attended the meeting.

BUILDING RARE RESILIENCE

Using UK specific data from the EURORDIS Rare Barometer Covid-19 Experience Survey, and findings from our weekly community check-ins during the months of April, May and June 2020, we produced a report, ‘ The Rare Reality of Covid-19 ’. This highlighted how people living with rare conditions had been placed under immense

Identifying high levels of stress and signs of burn out in our community, we partnered with Rare Minds to offer group counselling to organisation leaders and SWAN UK parents. Over 50 people benefited from this pilot, and participants from Genetic Alliance UK organisations continue to meet.

Genetic Alliance UK ltd

DRIVING PROGRESS

POLICY AND PUBLIC AFFAIRS

Despite Covid-19, this has been a year of ongoing progress in key areas of work for Genetic Alliance UK and our members.

Genomics

Patient voice in policy development

We provided input to an Medicines and Healthcare products Regulatory Agency Patient Group Consultation Event on Regulatory Flexibilities during Covid-19 and a consultation event held by the Department of Health and Social Care (DHSC) regarding feedback on the initial draft of the new UK Framework for Rare Diseases.

In genomics, the NHS Genomic Medicine Service continued to build towards the roll out of the full service, and we were able to contribute through our connection to the UK National Genomics Board and NHS England’s Genomics Board. We also welcomed the publication of the UK’s new genomic strategy, Genome UK .

NICE methods and process review

The NICE methods and process review presents an opportunity to improve access to medicines for rare conditions. Our team had a position on the working group throughout the year, and we contributed to the methods review consultation and the consultation on topic selection.

We continue to input as a patient representative member to the Rare Disease Implementation Group (RDIG) which has oversight for the Welsh Action Plan and Genomics Partnership Wales Sounding Board. Throughout the last year, we fed in the experience of people living with rare conditions during the pandemic via the Rare Disease Implementation Group lead and lead commissioner for the Welsh Health Specialised Services Committee (WHSSC). We also fed in issues affecting the rare disease community via the Welsh Government Third Sector Stakeholder Forum.

Cell and gene therapy engagement workshops

UK Rare Diseases Framework

Most importantly the UK Rare Diseases Framework was published in January 2021, just in time to take over from the UK Strategy for Rare Diseases which ended in 2020. Members of our Rare Disease UK Patient Empowerment Group from across the UK played a key role in advising on the development of the Framework, and since publication we have switched our attention to supporting the development of action plans in the four nations. We were delighted when the chair of the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed conditions secured a Westminster Hall debate on rare diseases.

In 2019, Genetic Alliance UK published two important reports, our Patient Charter on newborn screening , and our Action for Access report on access to medicines for rare conditions. Our original plan for 2020 was to promote the messages in these reports, and take forward these issues for our community. We had to shelve these plans, and intend to review these issues at the beginning of the next year to reframe them in the context of Covid-19, and take them forward in collaboration with our members.

We received over 100 applications to take part in a series of three virtual workshops on cell and gene therapy that took place in November and December 2020. We selected a small cohort of 20 candidates to take part with the recordings of the workshops sent to the remaining applicants alongside a survey.

‘I felt all areas were well covered and especially appreciate the fact that they were moderately geared to the understanding of those of us who had little prior knowledge. The extra reading resources and videos contributed to such a lovely comprehensive seminar.’

The purpose of these workshops was to follow up on the previous work with Progress Educational Trust on Understanding Genome Editing with the aim of educating people with experience of living with a genetic or rare condition about cell and gene therapy. It was also to prepare a report which describes the priorities of our community in learning about cell and gene therapy.

The project is ongoing and will be completed in the autumn of 2021.

Genetic Alliance UK ltd

WALES

Genomics Partnership Wales Patient and Public Sounding Board consultations

We worked with Genomics Partnership Wales to recruit the second cohort of 11 new members to the Patient and Public Sounding Board which provides patient and public advice and input to the work of the Genomics of Precision Medicine Strategy and its programme of work.

We held three meetings of the Board in the reporting period for 2020 and two in the reporting period for 2021 (28 April 2020, 14 July 2020, 8 October 2020, 19 January 2021, 15 April 2021).

Topics included: input to the design and development of a new estates building bringing together genomic testing, clinical facilities and genomic research in Wales and feedback on patient and public involvement in other programmes including pathology, imaging and advanced therapies.

Coproduced with members, an impact video has been created to showcase the impact members have made through being involved with the Board.

Cross Party Group meetings

The Welsh Cross Party Group (CPG) for Rare, Genetic and Undiagnosed Conditions held its inaugural meeting in the Senedd in September 2019. Since then, the group, chaired by Angela Burns MS and administered by Genetic Alliance UK, has heard a broad range of people’s experiences. Over the last 12 months, meetings have moved to a virtual platform and we have been able to feed back experiences directly to Welsh Government through the third sector stakeholder forum.

September 2020: The first virtual meeting of the CPG since the start of the pandemic focused on the immense pressure Covid-19 was putting on people living with rare conditions. Reports highlighted difficulties gaining access to appropriate support, information, care and treatment and an increased level of social isolation had a detrimental impact on mental health.

January 2021: The final meeting of the CPG ahead of the Senedd elections in 2021 examined the future for individuals and families affected by rare conditions in Wales. Key findings from Genetic Alliance UK’s Rare Experience Report 2020 were presented and alignment to the priorities in the new UK Rare Diseases Framework were highlighted. Discussion focused on priorities for the implementation of a Welsh Action Plan.

February 2021: Angela Burns MS, Chair of the Welsh Cross Party Group launched the final report of the Cross Party Group for Rare, Genetic and Undiagnosed Conditions. Chair of the Rare Disease Implementation Group, Dr Graham Shortland spoke about Wales’ plans for implementing the Framework and two guest speakers highlighted their experiences of life with Turner Syndrome.

Bringing together people affected by rare conditions, patient group representatives, health care professionals and researchers, the report identifies a series of recommendations which would improve the lives of people affected by rare conditions across four broad themes:

The effect of rare conditions on mental health
Access to orphan medicines
The impact of Covid-19 on those affected by rare conditions
A future Welsh Action Plan to implement the UK Rare Diseases Framework

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CROSS PARTY GROUP ON RARE, GENETIC & UNDIAGNOSED CONDITIONS Final Report 2021

Genetic Alliance UK ltdGenetic Alliance UK ltd

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REPORT OF THE WELSH CROSS PARTY GROUP FOR RARE, GENETIC AND UNDIAGNOSED CONDITIONS

SCOTLAND

Cross Party Group meetings

The Cross Party Group (CPG) on Rare, Genetic and Undiagnosed Conditions adopted virtual meeting practices from March 2020 and continued to provide a forum for people living with rare, genetic and undiagnosed conditions to come together to discuss and debate key issues. Since March 2020 the CPG has held five meetings.

May 2020: The first virtual meeting of the CPG was an opportunity to address the significant challenges affecting the community in the first months of the Covid-19 pandemic. Professor Jason Lietch, National Clinical Director for NHS Scotland, attended the meeting to provide an in depth question and answer session and to hear the experiences directly from group members.

October 2020: The impact of Covid-19 was addressed again with a presentation of Genetic Alliance UK’s ‘The Rare Reality of Covid-19 Report’.

January 2021: The CPG held a meeting focused on the vaccination programme.

November 2020: The CPG meeting was attended by the CoOrdiNated Care Of Rare Diseases (CONCORD) study team who provided an overview of their findings on the principles of care coordination. This session informed the development of the CPG’s report, ‘Improving Care for Rare Conditions in Scotland’, which was agreed at the final meeting of the CPG in March 2021.

June 2021: Due to the 2021 Scottish Parliament election, the current CPG ceased to exist on 26 March 2021. Following the election, work has been undertaken to re-establish the CPG, and a first meeting of the new CPG will be held in June 2021.

Scotland policy – ‘Improving Care for Rare Conditions in Scotland’ report

On 23 March 2021, the Cross Party Group published the ‘Improving Care for Rare Conditions in Scotland’ report .

The report provides a narrative of experiences raised with the Cross Party Group in the 2016-2021 parliamentary session and outlines what is needed to increase awareness of rare conditions among healthcare professionals and to improve coordinated care in Scotland.

‘Improving Care for Rare Conditions in Scotland’ calls for the development of a funded Rare Conditions Coordination Service for Scotland.

The report is intended to inform implementation of the UK Rare Diseases Framework and the development of the new Scottish Action Plan for Rare Diseases.

Engagement networks

In Scotland, work is underway to formalise the way in which we engage and involve people in our work. Through the development of engagement and involvement networks, we will seek to build a strong multi-stakeholder community.

We have developed the Scottish Virtual Involvement Panel for people living with, or caring for someone living with, a rare, genetic or undiagnosed condition in Scotland. Our Virtual Involvement Panel will be at the heart of our work in Scotland and will provide our ‘VIPs’ (Virtual Involvement Panelists) an opportunity to contribute to our work and wider policy and service development decisions.

Virtual Involvement Panellists receive regular, information e-newsletters with news about developments in health and social care services. They will also be invited to attend a programme of digital events, contribute their experience for media work and be invited to take part in surveys and consultation events to shape policy and services in Scotland.

The Virtual Involvement Panel will play an important role in the development of the Scottish Rare Diseases Action Plan, as Genetic Alliance UK will be working closely with the Scottish Government to ensure people living with rare conditions are actively involved in the development and implementation of the plan.

Work is also underway to develop a Policy Involvement Network to bring together patient organisations in Scotland to have their say on genomic, rare disease and other relevant policy being developed by the Scottish Government and NHS Scotland. We are also growing our Professional Engagement Network, bringing together professionals working in health and social care in Scotland with an interest in rare, genetic and undiagnosed conditions to provide them with relevant information, training opportunities and the option to share their views on our policy work.

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A report by the Cross Party Group of Rare, Genetic and Undiagnosed Conditions

Genetic Alliance UK Genetic Alliance UK ltd

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REPORT OF THE SCOTLAND CROSS PARTY GROUP FOR RARE, GENETIC AND UNDIAGNOSED CONDITIONS

RESEARCH

We were fortunate that the impact of the Covid-19 pandemic on our two major research projects was minimal. Data collection for the CONCORD study on care coordination was largely complete before the first wave. We switched the face-to-face CONCORD workshops planned for summer 2020 to online events, which had the positive effect of allowing more geographically diverse groups to attend. The 2020 Rare Experience survey was always going to be an online activity, and again we were able to hold online workshops to test the findings in lieu of face-to-face meetings. The pressures facing our community meant that activities aimed at upskilling our members in research techniques were deprioritised but we hope to revitalise them in the forthcoming year.

The number of external researchers seeking our support for their studies increased as many Covid-19specific projects were launched. We promoted good quality studies that were relevant to people with rare conditions to our networks, including bringing academic speakers into our community check-ins, and we have developed new ongoing relationships with researchers as a result. We also supported our member Ataxia UK to design their own survey and analyse the results, and co-presented findings at Ataxia UK events.

CoOrdinated Care of Rare Diseases (CONCORD)

We have now finished the data collection and analysis for the CONCORD project which were presented at a virtual meeting attended by 170 people and published on our website . The results were also presented as a poster at the European Conference on Rare Diseases (ECRD). See page 13).

Collaboration with external researchers has led to publication of the following peer-reviewed papers coauthored by members of our research team:

Simpson A , Bloom L, Fulop NJ, Hudson E, LeesonBeevers K, Morris S, Ramsay AIG, Sutcliffe AG, Walton H, Hunter A . How are patients with rare diseases and their carers in the UK impacted by the way care is coordinated? An exploratory qualitative interview study. Orphanet Journal of Rare Diseases 2021; 16: 76.
Hammond J, Garner I, Hill M, Patch C, Hunter A , Searle B, Sanderson SC, Lewis. Animation or leaflet: Does it make a difference when educating young people about genome sequencing? Patient Education and Counseling, 2021. In press.

Rare Experience 2020 report

Over 1,000 people responded to our five-yearly survey and 11 attended our follow up workshops. The Rare Experience 2020 report was launched in December 2020 with over 80 people in attendance.

This was the third comprehensive survey Genetic Alliance UK has undertaken to capture the experiences of people affected by rare conditions. It is seven years since the publication of the UK Strategy for Rare Diseases and a decade since we published the report of our first comprehensive survey - a decade in which we have seen significant progress in science, medicine and in terms of awareness of rare conditions.

Our 2020 survey provided a measure of the extent to which these advances have filtered through to impact on the lives of those affected by rare conditions, how their experiences have changed across the last decade, and a baseline against which we might judge future progress.

Whilst satisfaction remains high amongst those who have access to specialist care and treatment for their condition, we see few improvements for the majority of those who do not. The diagnostic odyssey remains a major challenge and new genomic services have yet to deliver on the promise of early and accurate diagnoses. The scale and frequency at which patients and families experience challenges relating to coordination of care seems to have been unaltered by the passage of time. Despite the commitments made in the UK Strategy, which came without specific financial resources dedicated to its implementation, there remains much to be delivered.

Messages from the Rare Experience 2020 report included:

People with rare conditions are insufficiently served by the system
Diagnosis is crucial
Awareness of rare conditions among professionals is valuable and needs improving
Professional care coordination is rare but necessary
Pockets of excellence can demonstrate how the system can deliver

Genetic Alliance UK ltd

RARE EXPERIENCE 2020 The lived experiences of people affected by genetic, rare and undiagnosed conditions

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Genetic Alliance UKGenetic Alliance UK ltd RARE EXPERIENCE 2020 REPORT, DECEMBER 2020

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CONCORD POSTER PRESENTED AT EUROPEAN CONFERENCE ON RARE DISEASES

MAKING THE VOICE OF OUR COMMUNITY HEARD

Our team sat on various committees, steering groups and attended numerous meetings during the year to represent the views of our community:

Advanced Therapy Medicinal Products – The Landscape, Challenges & Opportunities in Wales
Presented findings of mitochondrial research priority setting project to the Great Ormond Street Hospital metabolic clinical team
Association for Responsible Research and Innovation in Genome Editing conference on genome editing
BIO-Europe
Breaking Down Barriers Advisory Board
Congenital Anomalies and Rare Diseases Registration and Information Service for Scotland Expert Advisory Panel (Scotland)
Co-applicant Delivering Genomic Sequencing In Clinical Practice:
A Patient-centred Evaluation Of The New NHS Genomic Medicine Service
CRISPR Ideas Symposium
EURORDIS Round Table of Companies Summit on Newborn Screening
EXPRESS study patient and public involvement group
Genetic Counsellor Registration Board
Genetics Evaluation Panel (Scotland)
Genetics Laboratory Management Meeting (Scotland)
Genomics Leadership Group (Scotland)
Medicines Healthcare Regulatory Authority / Office of Life Sciences innovative regulation project interview
National Genomics Board
National Institute Health Research Bioresource Steering Committee
National Patient, Public and Professional Involvement Group (Scotland)
NHS England - Genomics People and Communities Forum
NHS England - Genomics Programme Board
NHS England - Patient and Public Voice Assurance Group
NHS England - Specialised Commissioning Stakeholder Forum
NHS England - Women and Children’s Programme of Care Board Meeting
NICE Guideline Committee - Children and young people with disabilities and severe complex needs
NICE Methods review - working group and task and finish groups
Office for Rare Conditions (Glasgow) Steering Group
Office of Health Economics Expert Roundtable: Reform options for the next Voluntary Pricing and Access Scheme
Preimplantation Genetic Testing Expert Panel (Scotland)
Public Involvement Network Advisory Group Meeting (Scottish Medicines Consortium)
Rare Disease Strategic Oversight Group Meeting
Responding to genetic risk associated with customary consanguineous marriage
Scotland Rare Disease Strategic Oversight Group
Scottish Medicines Consortium Patient Involvement Network (Scotland)
Solve RD Community Engagement Task Force
Steering Group Meeting
Wales Rare Disease Oversight and Implementation Group
Welsh Conservatives 2021 Manifesto Roundtable

Genetic Alliance UK ltd

BUILDING GREATER AWARENESS

Social media

We continue to have a strong social media presence with varied audiences on our different channels. This year the combined reach of our channels grew to 21,000 on Facebook and 41,000 on Twitter and we saw a combined growth of 2,657 new followers on Instagram, and 541 new followers on Linked In. Press included articles in the media planet rare diseases supplement, the New Scientist, Pharma Times, The Sun and Sky News.

Genomics cafés

Public Genomics Cafés, delivered by Genetic Alliance UK and Wales Gene Park form part of the Genomics Partnership Wales engagement programme. These are free and open to all events which include short, relaxed talks about genomics relating to health and medicine, with guest slots from health professionals, researchers, and those affected by genetic and rare conditions who share personal experiences.

Since May 2020 events have been virtual with themed cafés, online engagement and e-networking. Translation to a virtual platform has been successful, with a positive effect on attendee numbers and broader audiences from across Wales and beyond. Six virtual Genomics Cafés have been held, reaching over 420 people from the public and rare disease community.

In October 2020, a Young People’s Genomics Café – primarily aimed at the 16 to 25 age group – was launched. Two events have been held to date, attracting over 225 attendees.

Annual Rare Disease Patient Network meeting (Wales)

The annual Rare Disease Patient Network meeting was held virtually in December 2020 and was attended by 71 people affected by rare and genetic conditions. The meeting included the launch of Rare Experience 2020 report in Wales.

UNDIAGNOSED CHILDREN’S DAY

Undiagnosed Children’s Day takes place every year on the last Friday of April. Falling this year in the first national lockdown our plans were drastically impacted by the pandemic. We had to cancel our planned events and activities and move everything online at the last minute. Unsure how much engagement we would get as everyone was struggling to adjust to lockdown and shielding, the day ended up providing much needed light relief for the SWAN UK community.

Adapting the hashtag #PaintLockdownPink people took to social media to join in the fun in various ways including dying their hair and beards pink, baking pink cakes and having pink makeovers!

SWAN UK Twitter channel was taken over by our Parent Reps and bloggers who shared their experiences on the day.

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RARE DISEASE DAY 2021

Rare Disease Day takes place at the end of February each year. In 2021, it took place on Sunday 28 February and was celebrated in more than 85 countries around the world. Through our campaign Rare Disease UK, we are the official organiser of the day in the UK.

TWITTER

February - 641K impressions 28 February - 124,173 impressions #RareDiseaseDay 2021 trending

FACEBOOK

This year our activities were planned around three aims:

344 new likes on day #RareDiseaseDay2021 used in 31k posts

Utilise the unique opportunity provided by the Covid-19 pandemic to build greater understanding of what it is like to live with a rare disease, and the importance of research to provide answers.
Unite the UK’s rare community to have a strong, amplified voice with which to share their stories and experiences.
Show our solidarity with the rare disease community in other European countries in light of Brexit.

INSTAGRAM

New followers up 82% from January Content interactions up by 972.5% Instagram filter used by 1.1k people, 43.7 impressions

TIKTOK

100 followers in first week. #ShowMeYourRare challenge video viewed almost 3K times

For the first time, we decided to use the international EURORDIS branding for the day. We ran a six month programme of activities leading up to the day, starting with stakeholder planning events in the Autumn.

The official video,generated from user footage, was reviewed over 5,000 times and accompanied by a story a day published on our website (see pages 19 and 20). We also launched a new TikTok channel and Instagram filter.

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Virtual parliamentary event

In February we hosted the first ever UK-wide parliamentary event bringing together Health Ministers, parliamentarians, and health officials from all four nations. The meeting focussed on the implementation of the new UK Rare Diseases Framework in each UK nation. Over 230 people attended the event and Ministers from England, Scotland and Northern Ireland were able to contribute to the meeting. The video of the event of the meeting has since been viewed over 170 times.

‘It’s a great conference. Very touching stories.’ Lord Bethell

‘I think the event went beautifully. There were some really amazing speakers and I look forward to checking out some of the sections again.’ Rhoda Walker, Chair, NIRDP

‘It was a great event. Everyone seemed very engaged and to get the sort of line up you did from all four nations was really very impressive and hopefully reflects the level of interest and focus

on the subject.’ Sarah Walker, Senior Consultant Policy and Public Affairs, MAP BIO PHARMA

‘I wanted to say thanks for a really excellent and engaging event this morning. I was genuinely gripped throughout and took lots of notes.’ Jessica March, Associate Director for Public Policy & Government Affairs, UK & Ireland

Rare Disease Day video and stories

The UK’s official video was produced using footage supplied from the community, with a daily blog post published throughout February to accompany it.

This year we wanted to do something different that highlighted the highs and lows of having a rare condition. We also wanted to have the wider community more involved in the official video for the day so invited people to submit their footage to be included. Over 100 people sent up clips and 28 people also volunteered to share their stories to accompany it - you can read these by clicking on the image below and on pages 19 and 20.

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RARE DISEASE DAY 2021 VIDEO RARE DISEASE DAY 2021 VIDEO
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Rare Disease Day stories

Click on the images below to read the stories

LAUREN’S STORY

WILL’S STORY

SALLY’S STORY

MARY’S STORY

NUALA’S STORY

LUCY’S STORY

KIRSTY’S STORY

PAM’S STORY

CHRISTINE’S STORY

RAJ’S STORY

ABIGAIL’S STORY

GAIL’S STORY

MEGAN’S STORY

MYA’S STORY

PHIL’S STORY

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CHARLOTTE’S STORY

DOTTIE’S STORY

JEMMA’S STORY

SUZANNE’S STORY

LEANNE’S STORY

SARAH’S STORY

KAT’S STORY

KAREN’S STORY

CORRINNE’S STORY

JESSICA’S STORY

FRANCESCA’S STORY

RACHEL’S STORY

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RARE REACH FESTIVAL

Launched on Rare Disease Day, the Rare Reach Festival social media awards were a celebration of storytelling in the rare community. Over 100 entries were shortlisted by our judges: Lara Bloom from Ehlers Danlos Society, paralympian Natasha Coates, Cardigan Hughes from Same but Different, Rachel Farrow from Route 73 Consulting and Gavin Jones from Open Health. Click on the images to view the entries.

PEOPLE’S CHOICE AWARD @jessicamayhall

BEST IN SHOW

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Genetic Alliance UK ltd

BUILDING OUR COMMUNITY

WORKING WITH OUR MEMBERS

We are proud to be the UK’s largest alliance of organisations supporting the genetic, rare and undiagnosed community. Made up of over 200 members ranging from the large to the tiny, we welcomed 12 new members this year (see page 23). Over 50% of our members are small charities or voluntary led and represent a range of conditions from the rare to the ultra rare. We also have a number of umbrella organisations or those working within our community to support or upskill others.

Covid-19 and the move to virtual working and events has had a positive impact on our relationship with our member organisations encouraging a more interactive and dynamic interaction. This has given us a greater understanding of the issues many of our members, especially the smaller ones, are facing and how we can support them. Using the weekly community check-in we have hosted discussions on diverse topics to aid sharing tips and good practice including running virtual meetings, collaborating with industry, pairing with MSC student for research and supporting mental wellbeing. We also hosted sessions on the NICE methods review, the new genomic medicine service and the new Medics for Rare Diseases Rare Diseases 101 platform.

Our closer relationship with our members has been mirrored in taking a more proactive approach to engaging with them on our social media channels to help amplify their voice and showcase their work. We helped promote numerous awareness campaigns and during the run-up to Rare Disease Day we provided branded assets for 25 organisations. In partnerships with Findacure, we also ran three social media workshops to support organisations to produce their own graphics.

Despite the pandemic we have continued to offer information and support to individual members on a range of topics including access to medicine and new born screening. We also responded to over 1,000 emails and phone calls asking for information on a topics including insurance, access to genetic testing, PGD and vaccines and rare conditions.

Genetic Alliance UK ltd

NEW MEMBERS

Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK. Our members and the people they support are at the heart of everything we do. We were delighted to welcome 12 new members this year.

Syngap Research Fund

Neuroendocrine Cancer UK

Cure Myotonic Dystrophy UK

The Schinzel-Giedion Syndrome Foundation

Cystinosis Foundation UK

NF2 Biosolutions

Hadiza foundation

Northern Ireland Rare Disease Partnership

PIP-UK

SarcoidosisUK

Medics for Rare Diseases

Hope for Hasti

Genetic Alliance UK ltd

RARE RESOURCES – SCOTLAND

Rare Resources (Scotland) is a project designed to address the gaps in information and support provided to people living with, or caring for a person living with, a rare condition in Scotland.

Through co-production with our community we have developed the Rare Resources Toolkit - a downloadable, toolkit of information for families in Scotland who have recently received a diagnosis of a genetic or rare condition.

The toolkit contains a wide range of general information on genetic, rare and undiagnosed conditions as well as information on how to access reliable information, care and support in Scotland.

In 2021, we have expanded the toolkit to include a short leaflet for adults receiving a diagnosis of a rare condition. We have also developed a helpful leaflet for health professionals , designed by people living with a rare condition, which explains how they wish to be treated and where health professionals can access further information and training.

Due to the Covid-19 pandemic, plans to deliver a Rare Resources Roadshow in Scotland were postponed. The Roadshow was intended to feature a series of informal information sessions for people living with a rare, genetic condition, delivered in collaboration with local support, and healthcare services in six locations across Scotland.

Whilst the Roadshow could not take place, as part of the project, to we delivered a series of online events, activities to offer families support during the lockdown periods.

Events included:

A virtual mental health support session delivered by Breathing Space
Brew and Blether sessions (six informal coffeemorning sessions for people to share their experiences of lockdown - attendees were offered a mug, biscuit and tea bags to be posted to them)
A Q and A session with Scottish Government’s Vaccination Team

Over 40 people attended these events and we also offered 30 ‘boredom packs’ for children living with rare, genetic and undiagnosed conditions during lockdown. The boredom packs contained fun craft activities for children.

PAGE FROM THE RARE RESOURCES SECTION: NAVIGATING THE NHS IN SCOTLAND

Genetic Alliance UK ltd

FRONT PAGE OF RARE RESOURCES: GENETIC, RARE AND UNDIAGNOSED CONDITIONS EXPLAINED

SWAN UK

It was a difficult year for our SWAN UK families as they struggled to cope with the pandemic, shielding and lack of clear information about the risk of Covid-19 for their families.

Welcoming 195 members, this was a drop compared to previous years, and caused by the impact of Covid-19 on our usual outreach channels. We now support 3,476 members across the UK.

Parent Reps and the SWAN UK Council

Our usual volunteering programme has been paused during the pandemic but we have continued to meet virtually with our Parent Reps and SWAN UK Council members. They have helped us to continue to monitor the impact of Covid-19 on the undiagnosed community and how we can respond.

SWAN UK - Cymru

Family events

With all of our usual regional events cancelled, we quickly put a new programme of support in place including virtual drop ins, kids quizzes and discos and a Christmas sing and sign event. We also ran targeted outreach and support to SWAN UK dads including sending out care packages and running a comedy night.

‘Guy’s, for those who joined the Comedy Night and those who stayed on afterwards, what a great night and a BIG SHOUT OUT to the organisers, thank you.’ SWAN UK dad

‘Nice surprise with the bag of tricks, thank you. The chocolate was lovely and my youngest loved the Whoopi cushion….They’ve been in stitches with it before bath time...been the best fun all lockdown.’ SWAN UK dad

Emotional support

Recognising the additional emotional stress of Covid-19, we also piloted running weekly group counselling sessions for 23 parents.

‘I found it really helpful to connect with others who I could speak with freely without judgement. I felt able to talk about things that I hadn’t had the opportunity to ‘offload’ in a safe and supportive space.’ SWAN UK member

We were delighted this year to successfully be awarded a three year grant from the National Lottery in Wales to expand our SWAN UK support network in Wales. Our new bi-lingual outreach worker joined us in January and we officially launched the project on St David’s Day with our first ever bi-lingual newsletter. We also have new bi-lingual social media channels and are working on a Rare Resources: Cymru toolkit.

LOUISE JAMES, CHAIR, SWAN UK COUNCIL

Genetic Alliance UK ltd

Quarterly Newsletter Genetic Alliance UK ltd

FRONT COVER OF THE BI-LINGIAL SWAN UK CYMRU NEWSLETTER

BUILDING OUR ORGANISATION

As for many charities, the pandemic was a disruptive event that forced us to respond quickly and proactively to ensure our future. The financial situation at the end of the previous year meant that the team was primed to react quickly to the financial risks that the pandemic brought. We moved quickly to virtual working and made the difficult decision to furlough the majority of our staff team over the summer. The majority of our funders also reacted quickly to the urgent need to deliver a service to our community. The combination of our quick reaction and the support of our funders has allowed us to build back our organisational reserves despite the challenging circumstances.

Our organisation has now embraced the opportunities of virtual working and working from home. Those few team members for whom home working is not possible have had necessary adjustments made, with desk space rented as needed.

We undertook a full organisational and fundraising review exploring where we could make savings, work more effectively and how to maximise our fundraising capacity. As a result of the restructure we merged all our membership support activities with our work with the SWAN UK community into a new Engagement and Support department. This resulted in three new hybrid roles and some empty posts being made redundant. This allowed us to streamline our staff team to ensure we are working in the most cost effective way.

Our work with an external fundraising consultant identified areas of strength and areas of potential growth but the full execution of these plans were disrupted by the pandemic. The strength and dedication of our team however ensured that despite having very limited team fundraising capacity, we successfully gained funding for our Covid-19 relief programme, and a new grant from the National Lottery to develop a SWAN UK network in Wales. At the end of 2020-21 we recruited a new Director of Fundraising who developed a new three year fundraising strategy.

At the time of writing we are pleased to note that the average length of service of the current team is more than five years, and that eight out of the eighteen of the team have been with us longer than this time. The commitment of our staff, combined with their high levels of expertise, fosters a strong institutional memory - the latter of which we are also continuing to embed in new processes to reduce the potential risk associated with any future staff departures. The stability of the team, and strong working relationships between team members, allowed a smooth transition to virtual working and maintaining our team culture. It is also thanks to their dedication and hard work that we are ending this year in a much stronger financial position than the previous year.

MEMBERS OF THE GENETIC ALLIANCE UK TEAM

Genetic Alliance UK ltd

THE COMING YEAR

This has been a transitional year for Genetic Alliance UK in many ways. As we move forward into 2021/22 and beyond our focus will be on developing a sustainable and responsive organisation. Responsive to the changing national context as we move beyond the pandemic, responsive to a post Brexit world and most importantly, responsive to the needs of the community we serve - everyone affected by a genetic, rare or undiagnosed condition.

With our mid-point strategy review due in the Autumn, we will take this opportunity to reflect on our many successes over the last few years, but also be open and honest about the areas where we will have more work to do. As the UK’s largest alliance of rare genetic organisations, we have a responsibility to ensure that all voices are heard. So with a spirit of collaboration at the heart of everything we do, we will focus on strengthening existing relationships with our members and key stakeholders whilst also forging new, and repairing lapsed ones. We will strive to give our members the best possible platform to achieve their aims, including by introducing new member benefits to amplify their voice.

As we continue to welcome new members we will particularly focus on ensuring the voice of people living with rare conditions is as diverse as possible. During 2021/22 we will undertake a full diversity and inclusion review of our internal and external working practices and commit to taking action to make our organisation fully representative of the community we serve.

exchange information and support each other. It is crucial that we carry the thread of inclusion through to this element of our work so that the voice of our community in this process is diverse and representative.

The Framework has the potential to bring together many of our policy priorities including diagnosis, screening and access to medicines for rare conditions. We will continue to engage closely with the development of genomic medicine across the UK, and in the myriad expected opportunities to improve access to medicines for rare conditions that will arise from the Innovative Licensing and Access Pathway, the Innovative Medicines Fund and the NICE Methods and Process Review.

To an extent our strong performance in fundraising in the previous year was related to a quick reaction to the Covid-19 need, and the novelty of the situations charities in our sector faced. The funding environment is still constrained by the impacts of the pandemic, and the challenges our community faces continue to be considerable. This means income generation may be more difficult in this year than the previous. We intend to broaden our income streams as much as possible, broadening our relationships with corporate funders while maintaining our independence, expanding our approach with trusts and foundations, while maintaining the growth of our community fundraising activities. We will also explore and encourage collaborative and partnership funding to ensure the sustainability of the whole community.

Following the publication of the UK Rare Diseases Framework at the beginning of 2021, this year will be crucial to maximising the potential of this policy opportunity. We will put significant resources into ensuring that there are as many voices of people living with genetic, rare and undiagnosed conditions feeding into the development of the four nations’ action plans as possible. This will be done by empowering our membership to take up formal representative roles and ensuring our team members are connected to these roles, and also by empowering our broadest networks to feed into the process. We will support all these representatives and provide a forum for them to

We have no immediate plans to return to a fully staffed office in the near future and instead will utilise a hybrid approach with some staff members co-located in shared workspace, while the majority of the team work from home. Once the team is fullyvaccinated, we will consider how we can regularly bring the team together to foster and maintain the sense of team spirit that was a key element of our previous office-based environment.

Having had a transitional year, our focus is now on laying the groundwork for a sustainable future, which we will set out in detail in our upcoming strategy review.

Genetic Alliance UK ltd

TREASURER’S LETTER AND FINANCIAL REVIEW

31 March 2021

Thank you to all our members and funders. You have ensured that the work outlined in this report could continue at such a challenging time for the people we support.

REVIEW OF THE FINANCIAL POSITION INCOME

The results for the year are set out in the statement of financial activities on page 37. The total income for year was £939,440 (£804,434 in 2020).

The increase in income is a significant achievement in a challenging fundraising environment. It was driven principally by a greater level of funding from our supporters as shown in Note 2 of the Financial Statements. We were also able to access support from the Government’s Job Retention Scheme as the pandemic continued to disrupt our operations.

Expenditure

Total expenditure for the year was £808,907 (£1,005,274 in 2020).

The decrease in the spending is principally due to a marked fall in the funding secured for specific projects in support of our charitable activities and the disruption caused by the Covid-19 crisis.

The organisation also took a series of cost control measures during the year as part of the plan to ensure a more resilient financial position.

Surplus/Deficit

Our final financial position for the year across all funds is a surplus of £130,533 (deficit of £200,840 in 2020). The majority of the surplus is driven by a surplus on our unrestricted funds of £115,952 (compared to a deficit of £142,731 in 2020).

This reflects the changed income mix during the period and reduction in restricted project funding received.

This is made up of restricted reserves of £39,134 (£24,513 in 2020) and unrestricted reserves of £160,730 (£44,778 in 2020).

The small increase in restricted reserves is due to slightly higher income then spending on specific projects as detailed in Note 18.

The increase in unrestricted reserves is due to the success of income raising efforts in the period, a reduction in spending as noted above and thoughtful cost control measures.

The Trustees have set a target in the medium term to hold unrestricted reserves that equate to approximately six months of unrestricted expenditure. Our current level of reserves has significantly increased over the year and is now approximately four months by this measure. This is a positive development, however, the Board and Executive Team are clear that income generation and cost control measures need to continue to ensure that we can maintain and maximise our impact in the years ahead.

Conclusion

The financial year ended 31 March 2021 was a challenging one for Genetic Alliance UK from an operational and financial perspective. However, at the year end the financial position shows a notable improvement from that seen 12 months prior.

At the time of writing, Covid-19 remains the dominant issue likely to impact during the current financial year, however, the Executive Team have demonstrated their ability to lead and manage in a challenging environment.

In this uncertain time, financial risk still remains and the year ahead will require a renewed focus on fundraising and continued cost consciousness. Genetic Alliance UK starts the period with stronger financial foundations and we are pleased that the Auditors have endorsed the view that Genetic Alliance UK remains a going concern and we will work to ensure that it continues to be there for all those who need.

Reserves Policy

Total reserves at the end of the financial year are £199,864 (£69,331 in 2020).

D A Ramsden Treasurer, Board of Trustees

Genetic Alliance UK ltd

REFERENCE AND ADMINISTRATIVE DETAIL

Governing document

The charity is controlled by its governing document, a deed of trust, and constitutes a limited company, limited by guarantee, as defined by the Companies Act 2006.

Registered company number

Chief Executive Officer

Dr Jayne Spink (until 31 March 2021) Lauren Roberts and Nick Meade (appointed as Joint Interim Chief Executives 1 April 2021)

Management team

Dr Amy Hunter, Nick Meade, Lauren Roberts

05772999

Auditors

Registered charity numbers

1114195 & SC039299

Registered office

During the period of this report: Third Floor, 86-90 Paul Street London, EC24 4NE Currently: Creative Works, 7 Blackhorse Lane, London, E17 6DS

Trustees

Ms S Butterworth Ms G J Clark Ms P A Farrant Ms S J Hunt Dr C Lewis Mr N McClements Ms S J Millman Mrs E Porterfield Mr D A Ramsden Ms S Walsh Mrs J S Wootton Dr S Wynn

Nyman Libson Paul Chartered Accountants, Regina House, 124 Finchley Road, London, NW3 5JS

Management accountant

Fiona Bevan Financial Management

Bankers

CAF Bank Ltd, 25 Kings Hill Avenue, Kings Hill, West Mailing, Kent, ME19 4JQ HSBC, Lion House, 25 Islington High Street, London, N1 9LJ Virgin Money Saving, Jubilee House, Gosforth, Newcastle upon Tyne, NE3 4PL

Website

geneticalliance.org.uk

Facebook

GeneticAllianceUK

Twitter GeneticAll_UK

Board observer

Robin Nott

Instagram

GeneticAllianceUK

LinkedIn Genetic Alliance UK

Genetic Alliance UK ltd

STRUCTURE, GOVERNANCE AND MANAGEMENT

Constitution

Genetic Alliance UK is the trading name for Genetic Alliance UK Ltd, a registered charity and a company limited by guarantee, incorporated on 6 April 2006 and governed by its Memorandum and Articles of Association.

Appointment and training of Trustees

Trustees are elected by the membership. Members co-opted in year and new nominees must be proposed and seconded by a member. Trustee appointments are for three years, after which trustees retire but are eligible for re-election for a further term of three years. New trustees must undertake an induction and are provided with an information pack detailing the charity’s work, governance, management policies and procedures, and potential conflicts of interest that may arise.

Governance and organisational management

Trustees met five times in the year ending 31 March 2021, where they reviewed the charity’s performance and determined and approved operating plans and budget. Trustees delegate certain powers in connection with the charity’s management, remuneration (related to responsibility and market comparisons) and administration to the Finance and Governance (F&G) committee, which met four times in the year. The Finance and Governance Committee provides detailed oversight and advice to the Board of Trustees in relation to financial management, financial viability, risk management and governance. The Finance and Governance committee has a minimum of three Trustee members, appointed from and by the Board of Trustees that includes the Treasurer (Chair of the Committee), Chair of Genetic Alliance UK and

the Deputy Chair. The Chief Executive Officer and Directors of Genetic Alliance UK are ex officio.

Risk management

Trustees have considered the major risks to which the charity is exposed and have established procedures including a risk register to identify and manage those risks. A new Covid-19 risk register has also been produced. All risks are reviewed at each meeting of the Board of Trustees and by the Finance and Governance Committee.

Fundraising

Genetic Alliance UK undertakes most of its fundraising activities in-house but used a consultant solely for the purposes of large grant applications. Genetic Alliance UK is registered with the Fundraising Regulator and have adhered to the codes of ethics laid out by the Fundraising Regulator and The Code of Fundraising Practice in relation to all fundraising activities. The charity received no complaints about its fundraising practice in this financial year.

Governing document

The charity is controlled by its governing document, a deed of trust, and constitutes a limited company, limited by guarantee, as defined by the Companies Act 2006.

Genetic Alliance UK ltd

TRUSTEE RESPONSIBILITY

The trustees (who are also the directors of Genetic Alliance UK Ltd for the purposes of company law) are responsible for preparing the Report of the Trustees and the financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

Company law requires the Trustees to prepare financial statements for each financial year which give a true and fair view of the state of affairs of the charitable company and of the incoming resources and application of resources, including the income and expenditure, of the charitable company for that period.

In preparing those financial statements, the trustees are required to:

Select suitable accounting policies and then apply them consistently.

In so far as the trustees are aware:

There is no relevant audit information of which the charitable company’s auditors are unaware.
The Trustees have taken all steps that they ought to have taken to make themselves aware of any relevant audit information and to establish that the auditors are aware of that information.

Auditors

The auditors, Nyman Libson Paul Chartered Accountants, will be proposed for re-appointment at the forthcoming Annual General Meeting.

Report of the trustees, incorporating a strategic report, approved by order of the board of trustees, as the company directors, on 11 August 2021 and signed on the Board’s behalf by:

Observe the methods and principles in the Charity SORP.
Make judgements and estimates that are reasonable and prudent.
Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charitable company will continue in business.

Elizabeth Porterfield , Chair, Board of Trustees

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

They are also responsible for safeguarding the assets of the charitable company and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

Genetic Alliance UK ltd

INDEPENDENT AUDITOR’S REPORT TO THE MEMBERS OF GENETIC ALLIANCE UK

Opinion

We have audited the financial statements of Genetic Alliance UK Ltd for the year ended 31 March 2021 set out on pages 37 to 53 which comprise the statement of financial activities, the balance sheet, the cash flow statement and the related notes, including a summary of significant accounting policies. The financial reporting framework that has been applied in their preparation is applicable law and United Kingdom Accounting Standards, including Financial Reporting Standard 102 The Financial Reporting Standard applicable in the UK and Republic of Ireland (United Kingdom Generally Accepted Accounting Practice).

In our opinion the financial statements:

Give a true and fair view of the state of the charitable company’s affairs as at 31 March 2021, and of its incoming resources and application of resources, including its income and expenditure, for the year then ended;
Have been properly prepared in accordance with United Kingdom Generally Accepted Accounting Practice; and
Have been prepared in accordance with the requirements of the Companies Act 2006, the Charities and Trustees’ Investment (Scotland) Act 2005 and regulations 6 and 8 of the Charities Accounts (Scotland) Regulations 2006 (amended).

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 charitable company 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 directors’ 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 company’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 directors 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 Trustees’ annual report, other than the financial statements and our auditor’s report thereon. Our opinion on the financial statements does not cover the other information and, except to the extent otherwise explicitly stated in our report, we do not express any form of assurance conclusion thereon.

In connection with our audit of the financial statements, our responsibility is to read the other information and, in doing so, consider whether the other information is materially inconsistent with the financial statements or our knowledge obtained in the audit or otherwise appears to

Genetic Alliance UK ltd

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.

Opinions on other matters prescribed by the Companies Act 2006

In our opinion, based on the work undertaken in the course of the audit:

The information given in the trustees’ report for the financial year for which the financial statements are prepared is consistent with the financial statements; and
The directors’ report has been prepared in accordance with applicable legal requirements.

Matters on which we are required to report by exception

In the light of our knowledge and understanding of the charitable company and its environment obtained in the course of the audit, we have not identified material misstatements in the Report of the Board of Trustees and Accounts.

We have nothing to report in respect of the following matters in relation to which the Companies Act 2006 and the Charities Accounts (Scotland) Regulations 2006 require us to report to you if, in our opinion:

Adequate accounting records have not been kept, or returns adequate for our audit have not been received from branches not visited by us; or
The financial statements are not in agreement with the accounting records and returns; or
Certain disclosures of directors’ remuneration specified by law are not made; or
We have not received all the information and explanations we require for our audit; or

companies’ regime and take advantage of the small companies’ exemption in preparing the Report of the Board of Trustees and Accounts.

Responsibilities of trustees

As explained more fully in the Trustees’ responsibilities statement set out on page 33 the trustees (who are also the directors of the charitable company for the purposes of company law) are responsible for the preparation of the financial statements and for being satisfied that they give a true and fair view, and for such internal control as the trustees determine is necessary to enable the preparation of financial statements that are free from material misstatement, whether due to fraud or error.

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

Auditor’s responsibilities for the audit of the financial statements

We have been appointed auditor under section 44(1)(c) of the Charities and Trustees Investment (Scotland) Act 2005 and under the Companies Act 2006 and report in accordance with regulations made under those Acts.

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.

The Trustees were not entitled to prepare the financial statements in accordance with the small

Genetic Alliance UK ltd

Irregularities, including fraud, are instances of non-compliance with laws and regulations. We design procedures in line with our responsibilities, outlined above, to detect material misstatements in respect of irregularities, including fraud. The extent to which our procedures are capable of detecting irregularities, including fraud is detailed below:

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 charitable company’s members, as a body, in accordance with Chapter 3 of Part 16 of the Companies Act 2006 and to the charity’s trustees, as a body, in accordance with Regulation 10 of the Charities Accounts (Scotland) Regulations 2006. Our audit work has been undertaken so that we might state to the charitable company’s members those matters we are required to state to them in an auditor’s report and for no other purpose. To the fullest extent permitted by law, we do not accept or assume responsibility to anyone other than the charitable company and the charitable company’s members as a body, for our audit work, for this report, or for the opinions we have formed.

We gained an understanding of the legal and regulatory framework applicable to the company and the industry in which it operates and considered the risk of acts by the charity that were contrary to applicable laws and regulations, including fraud. We designed audit procedures to respond to the risk, recognising that the risk of not detecting a material misstatement due to fraud is higher than the risk of not detecting one resulting from error, as fraud may involve deliberate concealment by, for example, forgery or intentional misrepresentations, or through collusion.

We focussed on laws and regulations which could give rise to a material misstatement in the financial statements, including, but not limited to, the Companies Act 2006.

Our tests included agreeing the financial statement disclosures to underlying supporting documentation and enquiries with management. There are inherent limitations in the audit procedures described above and, the further removed non-compliance with laws and regulations is from the events and transactions reflected in the financial statements, the less likely we would become aware of it. We did not identify any key audit matters relating to irregularities, including fraud. As in all our audits, we also addressed the risk of management override of internal controls, including testing journals and evaluating whether there was evidence of bias by the trustees that represented a risk of material misstatement due to fraud.

Jennifer Pope (senior statutory auditor) for and on behalf of Nyman Libson Paul LLP Chartered Accountants Registered Auditors 124 Finchley Road London NW3 5JS Date: 11 August 2021

We also communicated relevant identified laws and regulations and potential fraud risks to all engagement team members and remained alert to any indications of fraud or noncompliance with laws and regulations throughout the audit.

Genetic Alliance UK ltd

STATEMENT OF FINANCIAL ACTIVITIES INCLUDING INCOME AND EXPENDITURE ACCOUNT Year ended 31 March 2021

Unrestricted Funds £ 584,410 5,557	Restricted Funds £ 349,473 - -	Total Funds 2021 £ 933,883 5,557 -	Total Funds 2020 £ (Restated) 761,400 42,134 900
589,967	349,473	939,440	804,434
105,444 368,613	- 334,850	105,444 703,463	117,812 887,462
474,057	334,850	808,907	1,005,274
115,910 42	14,623 (42)	130,533 -	(200,840) -
115,952 44,778	14,581 24,553	130,533 69,331	(200,840) 270,171
160,730	39,134	199,864	69,331

The Charity has no recognised gains or losses other than the results for the year as set out above.

All of the activities of the charity are classed as continuing.

The notes on pages 40 to 53 form part of the these financial statements See note 11 for fund-accounting comparative figures

Genetic Alliance UK ltd

BALANCE SHEET

Year ended 31 March 2021

AS AT 31 MARCH 2021

Company number: 05772999

Note Current assets Debtors 12 Cash at bank and in hand Liabilities Creditors : amounts falling due within one year 13 Net current assets Total assets less current liabilities Net assets FUNDS Unrestricted funds General funds 19 Designated funds 19 Restricted funds 19 Total funds	2021 £ 126,373 239,896 366,269 (166,405) 199,864 199,864 199,864 62,409 98,321 39,134 199,864	2020 £ 146,855 112,055
		258,910 (189,579)
		69,331
		69,331
		69,331
		44,778 - 24,553
		69,331

These financial statements have been prepared in accordance with the special provisions for small companies under Part 15 of the Companies Act 2006.

These financial statements were approved by the Trustees on ....................... and are signed on their behalf by:11 August 2021

Liz Porterfield Chair of Trustees

The notes on pages 40 to 53 form part of the these financial statements

Genetic Alliance UK ltd

CASH FLOW STATEMENT

Year ended 31 March 2021

Note Net cash inflow from operating activities 15 Non-operational cash flows: Investing activities Investment income Net cash inflow/(outflow) for the year 16 Cashflow Restrictions	2021 £ 127,841 - - 127,841	2020 £ (183,259) 900
		900
		(182,359)

Charity law prohibits the use of net cash inflows on any endowed or other restricted fund to offset net cash outflows on any fund outside its own objects, except on special authority. In practice, this restriction has not had

The notes on pages 40 to 53 form part of the these financial statements

Genetic Alliance UK ltd

NOTES TO THE FINANCIAL STATEMENTS

Year ended 31 March 2021

1 Accounting policies

Accounting convention

The financial statements have been prepared under the historical cost convention, and in accordance with the companies Act 2006, the Charities Act 2011, the Financial Reporting Standard 102 (FRS102) and the requirements of the Charities Statement of Recommended Practice based thereon.

The charity is a public benefit entity as defined under FRS102.

Going concern

Following significant forward planning, fundraising efforts and other initiatives undertaken in early 2020, when the Charity was facing a challenging future, the Trustees and Executive have been able to reverse the financial decline and are able to report an unrestricted fund surplus for the year ended 31 March 2021 of £115,952, compared to a deficit for the previous year of £144,667. As a result of this outturn the Charity's unrestricted free reserves (general and designated funds) stand at £160,730 as at 31 March 2021, providing a solid base from which to continue to build reserves.

The charity did face additional challenges in the year arising from the economic and other consequences of the Covid-19 pandemic but any adverse effects were countered by the careful planning and budgeting undertaken.

The Trustees have now reviewed the current circumstances of the Charity and updated budgets, forecasts and projections for the next 12 months have been prepared. Prudent assumptions indicate that the Charity will earn a small surplus for the year ending 31 March 2022 and that adequate liquid resources will continue to be available to fund the activities of the charity for the forseeable future.

Accordingly, the Trustees consider it appropriate for the Charity to continue to adopt the going concern basis in preparing its financial statements.

Income

Income from donations is included in income when these are receivable, except as follows:

I. When donors specify that donations given to the charity must be used in future accounting periods, the income is deferred until those periods;

II. When donors impose conditions which have to be fulfilled before the charity becomes entitled to use such income, the income is deferred until the pre-conditions have been met.

Grants, including government grants are accounted for as receivable and are allocated to Income from Donations and Legacies. Other grants which are received subject to the charity providing a specific level of service are included within Income from Charitable Activities.

Membership income is accounted for as receivable.

Investment income is included on a receivable basis.

Donations in kind comprise donated services where the costs are measurable and the services would otherwise have to be paid for to maintain operational effectiveness.

Genetic Alliance UK ltd

1 Accounting policies (continued)

Expenditure

Expenditure is recognised in the period in which it is incurred. Expenditure includes attributable VAT which cannot be recovered.

Raising funds

Raising funds expenditure include those costs incurred in seeking voluntary contributions and other costs which include the costs of running and participating in fundraising events and collections.

Charitable Activities

Grants awarded are allocated to charitable activities.

Grants awarded are treated as expenditure and a liability in the accounts as soon as they become legal or constructive obligations. In the case of multi-year grant awards, the funding for all years is immediately recognised unless there are conditions which need to be met by the recipient to enable the release of subsequent years’ funding.

Governance costs

Governance costs include those costs associated with meeting the constitutional and statutory requirements of the charity and include the audit fees and costs linked to the strategic management of the charity. Governance costs are included within support costs.

Allocation and apportionment costs

Certain expenditure is directly attributable to specific activities and this has been included in those cost categories. Other costs, which are attributable to more than one category, are apportioned across cost categories on the basis of an assessment of workload carried out from time to time.

Overhead support costs have been allocated between fundraising and charitable activities. The apportionment has been allocated on the basis of usage and is analysed in note 6.

Pension costs and other post-retirement benefits

The charity contributes to defined contribution pension schemes. Contributions payable to the charity's pension schemes are charged to the Statement of Financial Activities in the period to which they relate.

Fixed assets

Fixed assets are held at cost less accumulated depreciation. Assets costing less than £500 are not capitalised.

Debtors

Debtors are initially measured at the setlement amount after any trade discounts. Subsequently they are measured at the value of the consideration expected to be received.

Cash

Cash balances represent cash and cash equivalents held with a maturity date of less than one year and are included at fair value.

Genetic Alliance UK ltd

1 Accounting policies (continued)

Creditors

Creditors are measured at the settlement amount less any trade discounts.

Fund accounting

Unrestricted funds can be used in accordance with the charitable objects at the discretion of the trustees.

Restricted funds can only be used for particular restricted purposes within the objects of the charity. Restrictions arise when specified by the donor or when funds are raised for particular restricted purposes.

Designated funds form part of unrestricted funds and have been identified as being for particular purposes by the Trustees. They are not restricted and can be transferred to general funds at any time at the discretion of the Trustees.

Further explanation of the nature and purpose of each fund is included in note 18 to the financial statements.

2 Income from donations and legacies

Donations from supporters Wellcome Trust University College London The Corra Foundation National Lottery funding City Bridge Trust Edward Gostling Grants from Government National Lottery funding Scottish Government Covid Job Retention Scheme fund Other grants received Donations through fundraising: Community fundraising Online donations	Unrestricted Funds £ 397,745 50,590 - - - - 4,994 - - 67,202 1,000 7,552 55,327	Restricted Funds £ 185,235 - 44,841 36,805 25,907 25,700 - 20,026 9,821 - - - 1,138	Total Funds 2021 £ 582,980 50,590 44,841 36,805 25,907 25,700 4,994 20,026 9,821 67,202 1,000 7,552 56,465
	584,410	349,473	933,883

Genetic Alliance UK ltd

2 Income from donations and legacies (continued)

Prior year Donations from supporters Wellcome Foundation University College London Sheffield Hallam University Other grants Smaller grants Grants from Government Department of Health and Social Care Public Health England Donations through fundraising: Community fundraising Online donations	Unrestricted Funds £ 58,564 95,000 - - - 18,941 20,000 25,000 13,039 48,004	Restricted Funds £ 241,450 - 64,563 9,907 85,000 81,932 - - - -	Total Funds 2020 £ (Restated) 300,014 95,000 64,563 9,907 85,000 100,873 20,000 25,000 13,039 48,004
	278,548	482,852	761,400

3 Income from: Charitable activities

Unrestricted Funds £ 5,557	Restricted Funds £ -	Total Funds 2021 £ 5,557
5,557	-	5,557
Unrestricted Funds £ 12,519 8,890 20,725	Restricted Funds £ - - -	Total Funds 2020 £ (Restated) 12,519 8,890 20,725
42,134	-	42,134

Genetic Alliance UK ltd

4 Expenditure on: Raising funds

Expenditure on: Raising funds
Staff costs, including consultancy work Fees Other direct costs Support costs (Note 6)	Total Funds 2021 £ 62,938 2,990 44 39,472	Total Funds 2020 £ (Restated) 34,373 - 5,403 78,036
	105,444	117,812

5 Expenditure on Charitable activities

Direct Costs £ 110,002 122,778 71,233	Support Costs (Note 6) £ 114,597 194,119 90,734	Total Funds 2021 £ 224,599 316,897 161,967
304,013	399,450	703,463
Direct Costs £ 274,218 257,935 85,474	Support Costs (Note 6) £ 78,522 127,362 63,951	Total Funds 2020 £ (Restated) 352,740 385,297 149,425
617,627	269,835	887,462

£244,779 of the above support costs in notes 4 and 5 and £229,278 of direct costs relate to unrestricted funds spent during the year. £194,143 of support costs and £140,707 of direct costs relate to restricted funds spent during the year.

£254,271 of the above support costs in notes 4 and 5 and £209,313 of direct costs relate to unrestricted funds spent during the prior year. £93,600 of support costs and £448,090 of direct costs relates to restricted funds spent during the prior year.

Genetic Alliance UK ltd

6 Support costs

Support costs are allocated between raising funds and charitable activities on the basis of usage. Support costs, included in notes 4 & 5, are as follows:

Staff costs Communications Office and admin costs Travel Finance costs Professional fees Governance costs (Note 7)	Raising Funds £ 32,455 1,637 5,380 - - - -	Charitable Activities £ 271,435 13,691 44,999 231 889 58,005 10,200	Total 2021 £ 303,890 15,328 50,379 231 889 58,005 10,200
	39,472	399,450	438,922

Prior year Staff costs Office and admin costs Travel Finance costs Professional fees Governance costs (Note 7)	Raising Funds £ 34,154 43,882 - - - -	Charitable Activities £ 127,983 97,203 28 971 36,407 7,243	Total 2020 £ (Restated) 162,137 141,085 28 971 36,407 7,243
	78,036	269,835	347,871

7 Governance costs

Auditor's fees - for audit services Accounts review Trustee expenses	Total Funds 2021 £ 7,200 3,000 -	Total Funds 2020 £ 7,200 - 43
	10,200	7,243

Genetic Alliance UK ltd

8 Net income/(expenditure) for the year

This is stated after charging:

		2021	2020
		£	£
Auditor's remuneration	- for audit services	7,200	7,200
Trustees' travel, meeting and training expenses		-	43

No Trustee received any remuneration during the year.

9 Staff costs and numbers

The aggregate payroll costs were:

Wages & salaries Social security costs Pension contributions Redundancy costs	2021 2020 £ £ 483,459 528,270 47,496 49,269 33,650 37,209 33,901 -
	598,506 614,748

The number of employees whose employee benefits exceeded £60,000 during the year were:

Between £60,001 and £70,000 Between £70,001 and £80,000	2021 - 1	2020 1 -

The average weekly number of employees during the year was 17 (2020: 22), calculated on the basis of average headcount. The total employment benefits received by key management personnel including employer's national insurance and employer's pension contributions were £234,821 (2020: £246,460).

10 Taxation

The charity is exempt from corporation tax on its charitable activities.

Genetic Alliance UK ltd

11 Statement of Financial Activities comparative figures

Unrestricted Funds £ (Restated) 278,548 42,134 900	Restricted Funds £ (Restated) 482,852 - -	Total Funds 2020 £ (Restated) 761,400 42,134 900
321,582	482,852	804,434
116,888 346,696	924 540,766	117,812 887,462
463,584	541,690	1,005,274
(142,002) (2,665)	(58,838) 2,665	(200,840) -
(144,667) 189,445	(56,173) 80,726	(200,840) 270,171
44,778	24,553	69,331

During the current year, the trustees reviewed the classification of income and expenditure, and reallocated the total amounts to better reflect the nature of the transactions in the light of the requirements of the Statement of Recommended Practice.

12 Debtors

Due in less than one year: Trade debtors Prepayments and accrued income Other debtors	2021 £ 125,729 - 644	2020 £ 66,665 62,390 17,800
	126,373	146,855

Genetic Alliance UK ltd

13 Creditors: amounts falling due within one year

Trade creditors Social security and other taxes Other creditors Accruals and deferred income	2021 £ 7,551 11,248 3,446 144,160	2020 £ 87,442 27,054 4,851 70,232
	166,405	189,579

14 Operating lease commitments

At 31 March 2021, the charity had future minimum lease payments under non-cancellable operating leases as follows:

Expiry Date: Not later than one year: Later than one year, and not later than 5 years:	2021 2020 £ £ 5,171 5,839 - 6,464 5,171 12,303 Equipment	2021 2020 £ £ 5,171 5,839 - 6,464 5,171 12,303 Equipment
	5,171	12,303

15 Reconciliation of net movement in funds to net cash inflow from operating activities

Statement of Financial Activities: Net movement in funds Investment income (Decrease)/increase in creditors: current liabilities Decrease / (increase) in debtors Net cash inflow/(outflow) from operating activities	2021 £ 130,533 - (23,174) 20,482 127,841	2020 £ (200,840) (900) 86,235 (67,754)
		(183,259)

Genetic Alliance UK ltd

16 Analysis of changes in cash during the year

2021 £ 239,896	2020 £ 112,055	Change £ 127,841
2020 £ 112,055	2019 £ 294,414	Change £ (182,359)
1 April 2020 £ 112,055	Cashflow Movements £ 127,841	31 March 2021 £ 239,896
112,055	127,841	239,896
1 April 2019 £ 294,414	Cashflow Movements £ (182,359)	31 March 2020 £ 112,055
294,414	(182,359)	112,055

Genetic Alliance UK ltd

18 Movement in Funds

For the year ended 31 March 2021

At 1 April 2020 £ 28 - 13,047 1,061 6,881 - - 42 - 3,494 - - - -	Income £ - 9,821 10,000 44,841 - 6,364 25,907 - 20,026 10,000 38,600 2,846 158,505 22,563	Expenditure £ (28) (8,512) (4,646) (45,902) (1,439) (6,364) (15,979) - (20,026) (9,440) (38,600) (2,846) (158,505) (22,563)	Transfers £ - - - - - - - (42) - - - - -	At 31 March 2021 £ - 1,309 18,401 - 5,442 - 9,928 - - 4,054 - - - -
24,553	349,473	(334,850)	(42)	39,134
44,778 - - -	182,069 60,000 290,748 57,150	(162,607) (25,133) (227,294) (59,023)	(1,831) - - 1,873	62,409 34,867 63,454 -
44,778	589,967	(474,057)	42	160,730

69,331	939,440	(808,907)	-	199,864

Fund descriptions

Restricted funds

Rare Disease Day - funds received to help with the costs of putting on our annual Rare Disease Day

Scotland Boost - funds received for the dissemination of a toolkit for families affected by genetic, rare and undiagnosed conditions.

Action for Access - funds received to help with the dissemination of the messages in the Action for Access report. Concord - funds received for research on coordination of care in the UK and dissemination of findings. RD PSPs - funds received for establishing, and dissemination of, research priorities for mitochondrial disease.

Genetic Alliance UK ltd

18 Movement in funds (continued)

SWAN UK: Dads' Summit - funds received for outreach for dads of children affected by undiagnosed genetic conditions

SWAN UK Wales - funds received for the development of a support network in Wales for families with children affected by undiagnosed genetic conditions

Genomic Data - funds were received to complete work to understand the attitudes of people living with genetic, rare and undiagnosed conditions and storage of their data.

Building Rare Resilience - funds are restricted to supporting our members with the challenges associated with Covid-19

Talking about Gene Therapy - funds are restricted to fund workshops with people living with rare and genetic conditions and report on the outcomes.

Patient survey - funds are restricted to implementing and analysing a survey on individuals' experiences of living with rare and genetic condition and disseminating the findings

Rare Resources - funds are restricted to the development and dissemination of a toolkit for families affected by genetic, rare and undiagnosed conditions

Designated funds

Rare Disease Day - funds were set aside by the trustees to support awareness of rare conditions. They will be spent on awareness raising activities.

SWAN UK General Donations - the trustees have set aside these funds received as general donations to SWAN UK, to ensure they are spent on activities within the SWAN UK community.

Genetic Alliance UK ltd

18 Movement in funds (continued)

For the year ended 31 March 2020

At 1 April 2019 £ 21,141 - 20,000 - 10,000 3,350 - 26,235 - - -	Income £ 21,141 224,950 73,750 - 54,000 9,906 64,563 5,000 - 3,042 26,500	Expenditure £ (42,282) (224,950) (93,722) (117) (50,953) (15,192) (63,502) (24,354) (612) (3,000) (23,006)	Transfers £ - - - 117 - 1,936 - - 612 - -	At 31 March 2020 £ - - 28 - 13,047 - 1,061 6,881 - 42 3,494
80,726	482,852	(541,690)	2,665	24,553
90,312 - 18,072 81,061	222,524 16,630 16,761 65,667	(266,121) (16,630) (34,716) (146,117)	(1,937) - (117) (611)	44,778 - - -
189,445	321,582	(463,584)	(2,665)	44,778

270,171	804,434	(1,005,274)	-	69,331

19 Analysis of net assets between funds

As at 31 March 2021 Bank and cash Other net assets	Restricted Funds £ 39,134 -	Unrestricted Designated Funds £ 98,321 -	Unrestricted General Funds £ 102,441 (40,032)	Total £ 239,896 (40,032)
	39,134	98,321	62,409	199,864

Genetic Alliance UK ltd

19 Analysis of net assets between funds (continued)

As at 31 March 2020 Bank and cash Other net assets	Restricted Funds £ 24,553 -	Unrestricted Designated Funds £ - -	Unrestricted General Funds £ 87,502 (42,724)	Total £ 112,055 (42,724)
	24,553	-	44,778	69,331

20 Related party transactions

There are no transactions with trustees or other related parties other than those disclosed as required by the SORP elsewhere in the financial statements.

Genetic Alliance UK ltd

ACKNOWLEDGEMENTS

Thank you to all the individuals and organisations who have supported our work during this difficult year. We are so grateful to everyone who has worked with us, volunteered or fundraised for us, or supported our work in other ways. We would also like to thank all our funders who have given grants, sponsorship or donations to support our work this year.

Akcea Therapeutics Albireo Alexion Amicus Therapeutics BioCryst Biogen Bluebird Bio Bond and Coyne Chiesi City Bridge Trust through London Community Response CORRA Foundation Covid-19 government emergency funding through National Lottery Gilead Illumina Incyte Janssen Kyowa Kirin Lupin Pharmaceuticals Medpace Novartis Gene Therapies Novartis Pharmaceuticals Orchard Therapeutics Pfizer PTC Therapeutics Rhythm Roche Sanofi Santhera Sarepta Sobi Spark Therapeutics Takeda The Catherine Cookson Foundation The Edward Gostling Foundation The National Lottery Wales UCB Celltech Vertex Vertex, Albireo Wellbeing Fund in Scotland Wellcome Trust

Genetic Alliance UK ltd

OUR MEMBERS

The Aarskog Foundation

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GENETIC ALLIANCE UK Report of the Board of Trustees and Accounts 2020-2021

REPORT OF THE BOARD OF TRUSTEES For the year ended 31 March 2021

CONTENTS

Genetic Alliance UK

WELCOME FROM THE CHAIR

OBJECTIVES AND AIMS

The objectives of the charity are to:

Public benefit

TERMINOLOGY WE USE

Genetic, rare and undiagnosed

Condition and disease

IMPACT OF COVID-19

COMMUNITY SUPPORT PROGRAMME

THE RARE REALITY OF COVID-19

Key findings from the Rare Reality of Covid-19 report:

BUILDING RARE RESILIENCE

DRIVING PROGRESS

POLICY AND PUBLIC AFFAIRS

Genomics

Patient voice in policy development

NICE methods and process review

Cell and gene therapy engagement workshops

UK Rare Diseases Framework

WALES

Genomics Partnership Wales Patient and Public Sounding Board consultations

Cross Party Group meetings

CROSS PARTY GROUP ON RARE, GENETIC & UNDIAGNOSED CONDITIONS Final Report 2021

SCOTLAND

Cross Party Group meetings

Scotland policy – ‘Improving Care for Rare Conditions in Scotland’ report

Engagement networks

RESEARCH

CoOrdinated Care of Rare Diseases (CONCORD)

Rare Experience 2020 report

Messages from the Rare Experience 2020 report included:

MAKING THE VOICE OF OUR COMMUNITY HEARD

BUILDING GREATER AWARENESS

Social media

Genomics cafés

Annual Rare Disease Patient Network meeting (Wales)

UNDIAGNOSED CHILDREN’S DAY

RARE DISEASE DAY 2021

TWITTER

FACEBOOK

INSTAGRAM

TIKTOK

Virtual parliamentary event

Rare Disease Day video and stories

Rare Disease Day stories

Click on the images below to read the stories

RARE REACH FESTIVAL

BUILDING OUR COMMUNITY

WORKING WITH OUR MEMBERS

NEW MEMBERS

RARE RESOURCES – SCOTLAND

SWAN UK

Parent Reps and the SWAN UK Council

SWAN UK - Cymru

Family events

Emotional support

BUILDING OUR ORGANISATION

THE COMING YEAR

TREASURER’S LETTER AND FINANCIAL REVIEW

31 March 2021

REVIEW OF THE FINANCIAL POSITION INCOME

Expenditure

Surplus/Deficit

Conclusion

Reserves Policy

REFERENCE AND ADMINISTRATIVE DETAIL

Governing document

Registered company number

Chief Executive Officer

Management team

Auditors

Registered charity numbers

Registered office

Trustees

Management accountant