## **CAMBRIDGE RARE DISEASE NETWORK** 

Company Registration number 09798317 Charity Registration number 1166365 **FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021** 



**CAMBRIDGE RARE DISEASE NETWORK** 

## **CONTENTS** 

## **FOR THE YEAR ENDED 31 DECEMBER 2021** 

||Page|
|---|---|
|Reference and Administrative Information|1|
|Trustees Annual Report|2-14|
|Statement of Financial Activities|15|
|Balance Sheet|16|
|Notes to the financial statements|17-22|
|Independent Examiner's Report|23|





## **CAMBRIDGE RARE DISEASE NETWORK** 

## **REFERENCE AND ADMINISTRATION INFORMATION FOR THE YEAR ENDED 31 DECEMBER 2021** 

|**Charity number**|1166365|
|---|---|
|**Company number**|09798317|
|**Principal Address**|C/o BCS Windsor House|
||Station Court|
||Station Road|
||Great Shelford|
||Cambridge|
||CB22 5NE|
|**Trustees**|Dr T Guilliams|
||Dr G Chandratillake|
||Ms. S L Berry|
||Dr J S Milner|
||Dr R A Jortner|
||Dr S M Leiter|
||Mr I M Chaitowitz|
|**Company Secretary**|BSC Cosec Ltd.|
|**Operations Manager**|Mrs J Balfour|
|**Independent Examiner**|Community360|
||Winsley's House|
||High Street|
||Colchester|
||Essex, CO1 1UG|



**1** 



## **CAMBRIDGE RARE DISEASE NETWORK** 

## **TRUSTEES ANNUAL REPORT FOR THE YEAR ENDED 31 DECEMBER 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 December 2020. The trustees have adopted the provisions of Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts following the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019). 

## **Charity Objectives and Activities** 

Cambridge Rare Disease Network is a platform for change. It is the infrastructure that unites patients, advocates, experts and leaders to address the challenges people face when affected by rare conditions. By sharing knowledge and experience, the journey towards better diagnosis, treatment and support for patients and their families is smoother and more certain. 

**Our Vision** : A world where people with rare diseases are valued and supported 

**Our Mission** : To create regional networks to improve the rare disease journey 

## **Our Aims** : 

- Stimulate and nurture cross-sector cooperation and collaboration. 

- Make support available for families. 

- Raise awareness of the rare disease journey. 

## **Charity Objects as recorded with the Charity Commission** 

1) The relief of sickness of persons with rare diseases, particularly, but not exclusively, by providing support, advice, and information for such persons, their families, carers, and those working with affected individuals. 

2) To advance the education of the public in general on the subject of rare disease and related syndromes and promote research for the public benefit in all aspects of that subject and publish the useful results thereof. 

## **Significant activities** 

## **Creating Networks to Improve the Rare Disease Patient Journey** 

In the EU, a rare disease is defined as a condition that affects less than one in 2,000 people. Currently, over 7,000 rare diseases have been identified, which collectively affect one in 17, amounting to 3.5 million people in the UK. Of these diseases, 80 % are genetic in origin, 50 % affect children, and only 5 % have an approved treatment. Despite this high prevalence, each condition affects so few people that they tend to be overlooked and misunderstood by health professionals, researchers, education and social care providers and the general public. This lack of awareness and information commonly leads to the “Diagnostic Odyssey”, where it takes an average of 4.8 years and 7.3 physicians to reach the correct diagnosis, and delays and misdiagnosis are common. Poor awareness also impacts patients receiving appropriate care, support in school and the workplace, leads to isolation for patients and families and creates a high social burden of care (Source: Engel et al., JRD, 2013. 

**2** 



## **CAMBRIDGE RARE DISEASE NETWORK** 

## **TRUSTEES ANNUAL REPORT FOR THE PERIOD ENDED 31 DECEMBER 2021** 

Despite advances in recent years, progress in diagnosis, developing treatments and assuring coordinated care continue to prove challenging and is affected by low patient numbers per disease, lack of education in rare diseases for healthcare professionals, difficulty recruiting enough patients for clinical trials, insufficient economic incentives, high cost of treatment, tribulation in reimbursing, low awareness of conditions and poor scientific understanding of disease mechanisms. 

## **Events, forums and communications** 

At CRDN, we are challenging this lack of awareness by delivering a range of visionary events and forums and a bold and proactive online communications presence. 

## **Events** 

We hold stakeholder and public-facing events to bring the challenges of the rare disease journey to the fore, provide a platform for engagement, and nurture impactful collaboration. 

## **Regional Community of People Living with Rare Diseases** 

We build a regional, connected, engaged, and empowered network of people affected by rare diseases to have a stronger voice collectively. Our community-building activities reduce isolation and give patients and their families the confidence to engage with other stakeholders as experts in their own or their children’s health and care. 

## **Companies Forum** 

We are building a network of Companies, healthcare professionals and researchers who can improve treatments and create technology solutions to enhance rare patients’ lives. We are embedding the patient voice and providing the scaffolding and platforms to help connect these groups and encourage collaborations to flourish. 

## **Patient Access** 

We use our communications strategy to highlight patient stories through a range of online, broadcasting and paper media channels. We engage new audiences through our online media campaigns and our events. We hope to secure additional, continued funding and donations by highlighting our cross-sector, collaborative and proactive approach. 

## **Public benefit** 

The trustees have complied with Section 17(5) of the Charities Act 2011. They have had due regard to the guidance on Public Benefit by the Charity Commission when exercising relevant powers and duties. 

## **Achievement and Performance January 2021 - December 2021 Significant Activities** 

## **Collaborating through COVID and beyond - ARDEnt (Action for Rare Disease Empowerment)** 

In March 2020, the COVID-19 pandemic turned many of our planmned events and activities on their head, so we reacted swiftly and adapted. Early on, CRDN's Managing Director, Jo Balfour, partnered with Medics4Rare Diseases CEO, DR Lucy McKay and Rare Revolution Founder, Rebecca Stewart to 

**3** 



## **CAMBRIDGE RARE DISEASE NETWORK** 

## **TRUSTEES ANNUAL REPORT FOR THE PERIOD ENDED 31 DECEMBER 2021** 

develop and lead on a COVID-19 response group of 30 cross sector advocates, including patient groups, industry, healthcare and policy experts. CRDN's Chair, DR Gemma Chandratilake and trustee Dr Ron Jortner also took part. 

The resulting report, 'Making the Unseen, Seen' was published on 5 May 2021 and launched through a multi-stakeholder webinar. The webinar attracted 358 attendees. It revealed the impact of the pandemic on every stage of the patient journey, from diagnosis to eventual management. It catalogues the re-assignment of specialists away from a rare disease, for fear of infection, the closure of clinics, the fracture of coordination of health and social care, and the delay or termination of research, evidence generation and clinical studies. At the same time, the pandemic has accelerated the evolution of remote monitoring, the adoption of telemedicine and a move towards more patient-centric and decentralised clinical trials. The report makes nine recommendations that should bring patients with rare disease into the light and make their management more robust for the future. 

Since its publication the ‘Making the Unseen Seen’ report has been downloaded 1329 times from the CRDN website, shared widely with over 50,000 people by the ARDEnt team and their organisations.  Its findings and recommendations have been referred to and adopted as part of the Department for Health and Social Care UK Rare Disease Framework 2021 and the related Action Plans for England, published in February 2022  The ARDEnt theme leads, including Jo Balfour from CRDN, have been  invited as rare diseases spokespersons on expert panels hosted by pharmaceutical companies Biomarin, Alexion and Takeda and as Patient Experts on the weekly Genetic Alliance UK Patient Empowerment Group which advises government policy on Rare Diseases.  In addition, ARDEnt theme leads have been involved in various Department of Health and Social Care expert panels supporting the development of the UK Rare Disease Framework 2021 action plans.  The report was used by the cross-party Public Policy Projects team to inform a ‘State of the Nation’ report on Rare Diseases. 

Media coverage of the report was widespread and included articles on the healthwareness.co.uk platform, by Frontline Genomics, Raconteur, Media Planet and Rare Revolution Magazine. ARDEnt is not a formally recognised organisation and therefore has no funding.  All contributors take part voluntarily.  CRDN successfully commissioned a Cambridge based Medical Communications company who provided £35,000 of pro bono support to create the final report. 

## **RAREsummit21** 

The focus of the autumn season of 2021 was CRDN’s 5[th] RAREsummit, held online for the first time, making it more accessible than ever to a global audience.  The event was held on a highly visual and interactive platform over one live day and on demand for 30 days following.  Building on the huge success of our virtual RAREfest20, RAREsummit21 attracted 48 key opinion leaders from the UK, Europe, the US and Asia, with a shared ambition to improve life's journey for families living with rare conditions.  Speakers took part in panel discussions, fireside chats and live pitching sessions, alongside over 38 interactive exhibition stands, short films and posters in an inspirational online gallery.  Themes covered during the event included medicines discovery, catalysing treatments for rare diseases, developing innovative ways to provide accessible and trustworthy health information, innovate solutions to rare disease challenges, running clinical trials without placebos, amplifying the patient voice, rare equity and early access programmes. 

**4** 



## **CAMBRIDGE RARE DISEASE NETWORK** 

## **TRUSTEES ANNUAL REPORT FOR THE PERIOD ENDED 31 DECEMBER 2021** 

We pride ourselves on creating unique events that will inspire and challenge the audience.  This year we continued our partnership with the Eastern Academic Health Science Network (Eastern AHSN) who had launched a survey at RAREfest20 to ask our patient community what their day to day challenges were. The outcome of that survey was a live innovation ‘Dragon’s Den’ style pitching session at RAREsummit21 which showcased the five best innovation solutions to these challenges as selected by an expert judging panel from 17 unique company entries. 

Another new addition to the Summit was a partnership with Medical Communications company Prime Global.  They helped us to increase the impact of our showcase Patient Journey poster exhibition by supporting ten patient groups who has previously submitted a poster to our gallery. They worked over 6 months to create new Patient Voice Publications with our patient group contacts to develop a poster which speaks to Pharma and helps the patient group clearly outline their unmet needs and challenges to the industry.  We look forward to continuing to work with prime Global to support more patient groups in the future. 

## **Attendees** 

Three hundred and fifty people gathered from 138 towns and cities across the UK and 24 countries to find a way forward.  This attendance was a 94 % increase on our inaugural conference in 2015 and a 32% on RAREsummit19. Some 42% of attendees were patient advocates, 29% from industry, 18% representing academia and 11% healthcare with all attendee groups showing a percentage increase on 2019. 

## **Feedback and Impact** 

Feedback on the event was consistently positive, 100% of people rating RAREsummit21 as good or excellent, 100% rating the organisation as good or excellent, 100% saying they would recommend it to others and 90% happy that there was a good variety of exhibition stands and posters.  One health care professional commented “I’ve just visited the exhibition and am blown away by the exhibitors I’ve not been aware of.  And I’ve been involved in paediatric rare disease work for 30 odd years for The British Paediatric Surveillance Unit.  Another attendee said “RAREsummit21 has turned my growing curiosity in Rare Disease into a reality where I was both able to connect with some amazing people and be inspired by the passion and activity that is going on throughout this community” and another reported “It was the first time I have attended a RAREsummit representing my patient group, and I have to say it was amazing.  I loved the whole set up and platform and I’ve come away with so many great ideas and resources, met some great people and made some new connections”. 

Over the duration of the event, we saw 2522 visits to exhibition stands and the poster and film gallery where materials were viewed, downloaded and conversations had between stakeholders. Over the coming year we will be assessing the longer-term impact of this event in relation to opportunities it has created and collaborations which have emerged. 

## **Support** 

RAREsummit is a vital element of CRDN’s fundraising strategy through sponsorship and ticket sales. Summit sponsorship in 2021 totalled £94,000 from 14 funders, up from £59,000 from 10 funders in 2019 – our highest single event sponsorship to date.  Ticket sales were lower at £8,215 as compared to £18,000 in 2019 as we reduced the cost for an online event.  We also received significant pro bono support to create the innovation pitching challenge and event from the Eastern Academic Health Science Network. 

**5** 



## **CAMBRIDGE RARE DISEASE NETWORK** 

## **TRUSTEES ANNUAL REPORT FOR THE PERIOD ENDED 31 DECEMBER 2021** 

We recruited over 20 volunteers to support with various aspects of the Summit.  They included medical and genomics students, industry professionals and members of our Unique Feet regional community. Ten of these contributed to the RAREsummit21’Through Your Eyes’ impact report with written reviews. 

## **Media** 

The event caught regional media attention and was featured in several Cambridge Independent news articles.  All live talks, panel discussions and innovation pitching session were recorded and made available on our YouTube channel post event.  To date recordings have been watched 1276 times on the event platform and our YouTube channel. 

## **UNIQUE FEET COMMUNITY** 

CRDN, with grant funding from Cambridgeshire Community Fund and the National Lottery COVID Fund, along with several smaller donations have continued to respond swiftly and with agility to the emerging COVID -19 pandemic situation for our regional community of families affected by a rare condition. 

The group has continued to flourish despite the complex situation. All original members continued to attend, and membership increased from 12 families and 36 beneficiaries in 2018 to 25 families and 90 beneficiaries, totalling 33 new beneficiaries during 2021.  Some children are on the COVID ‘extremely clinically vulnerable‘ list, and consequently, families have continued to shield intermittently through the year.  We continued to offer group activities online to keep families connected, active and supported during this challenging and isolating time, whilst safely opening up in person activities again.  The parents WhatsApp group continued to serve as a vital portal for sharing experiences, giving guidance, letting off steam and keeping each other motivated and in good spirits. 

In person group activities revolved around in beautiful, therapeutic, outdoor spaces such as the privately run Challis Gardens and Cambridge Botanic Gardens providing a safe place to play and explore freely. 

## **Ambassadors and Advocacy** 

Unique Feet parents continued being the voice of rare disease in our community, despite of and in response to the pandemic. 

Notably, families have worked with CRDN to develop a Rare Hospital Passport.  This resource evolved to support patients with rare diseases, particularly those with communication difficulties, who, in the context of COVID-19, experienced strict limitations on visitors and may find their usual medical team redeployed. We have received pro bono design support from Costello Medical to finalise this and roll out the passport for more general use to the whole rare disease community in 2021. 

Families have also been involved in a collaborative project exploring children and young people’s experience of transitioning to adult care undertaken by Costello Medical, CRDN and Cambridge based charity Findacure. This project has involved focus groups with young people, parents, patient groups and health professionals followed by a multi stakeholder round table discussion and will yield a report for circulation in early 2022. 

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## **CAMBRIDGE RARE DISEASE NETWORK** 

## **TRUSTEES ANNUAL REPORT FOR THE PERIOD ENDED 31 DECEMBER 2021** 

Parents and children developed a monthly community newsletter, joined the Cambridge Children’s Hospital Network to help shape the design of this new resource, and undertook interviews for several news stories in local papers, pharmaceutical journals, and BBC Look East.  Some parents have been speakers at conferences and events to tell their rare disease journey story.  We have seen the true impact of building a regional community and the influence these collective voices can have in shaping local health, social care and education policy and will continue to give families a range of platforms to have a voice.  Families took part in an incredible array of activity this year including: 

- Were the focus of BBC Look East TV and Cambridge Independent news pieces 

- Created PharmaForum Magazine Patient Insight articles 

- Contributing to an IQIVIA paper on the value of play therapists in commercial and clinical research 

- Attended DHSC expert round table on the UK Rare Disease Framework action plans 

- LIlluminated Kings College for their child’s rare disease celebration day. BBC TV, radio and newspaper coverage 

- Piloted an Illumina art project 

- Became members of Cambridge Children’s Hospital development forums 

- Supported CRDN’s Rare Hospital Passport project 

- Took part of focus groups on transitions to adult care 

- Contributed to CRDN’s Rare Disease Day awareness campaign with stories and social media work 

- Creatied short films ‘Rare Disease Day Every Day’ which have been viewed 1502 times 

- Trialling an app by Thriving.ai – finalist in RAREsummit21 dragons den pitching 

- Worked in a self-employed capacity for CRDN in communications 

- Volunteered in development of Unique Feet future strategy 

- Volunteered in Unique Feet activities 

- Volunteered to help with grant applications and fundraising 

- Fundraised @£3000 in 2021 

## **COMPANIES FORUM** 

Companies Forum continued to make progress over the last year.  Meetings were held virtually and although we have missed the vibrant networking element of in person meetings, we have been pleased to host some dynamic discussions and activities and welcome new members. 

In May we held an inaugural Patient Group and Industry Partnering event which brought together 11 rare disease patient groups alongside 11 companies working in the rare disease space; our goal was to form collaborations towards the development of new treatments. Of the thousands of rare diseases currently identified, around 95% have no treatment, and most of the remaining 5% have limited treatment options. Development of treatments for rare diseases is often hindered by small market size, inadequate sources of information, and low awareness of the conditions. CRDN Companies Forum aims to tackle these issues and contribute to the development of new treatments through creation of the right networks. 

The event featured short pitches by patient groups, followed by a series of speed-dating style partnering sessions, where representatives from each patient group and each company had the chance to meet and discuss potential common interests. 

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## **CAMBRIDGE RARE DISEASE NETWORK** 

## **TRUSTEES ANNUAL REPORT FOR THE PERIOD ENDED 31 DECEMBER 2021** 

One company said this was a great opportunity to hear in very succinct terms what people’s needs were” and a patent group reported “we are actively following up with five companies that we were not in touch with before so definitely a success”. 

Progress is being tracked over time, but early feedback showed that patient groups were collaborating with one company on developing antibodies to help research, another in discussions around the diagnostic odyssey, whilst others were exploring advocacy opportunities. 

We were delighted to be chosen by international company Medidata to be one of their Social Impact Lab charity partners in 2021.  A team of ten of their UK and European staff worked with us pro bono over three months helping to explore the impact of this partnering event and to develop a framework for future events of this kind.  We look forward to developing this further in 2022 and beyond. 

In July we held a meeting with a speaker from the MHRA exploring the new ILAP (Innovative Licensing Access Pathway).  The new pathway represents a totally new way of thinking and is a truly collaborative approach between the healthcare system, the pharmaceutical industry and patients.  The aim is for it to transform the way innovative medicines reach patients in the UK. Partnering with the MHRA and others to build this frictionless pathway to the timely availability of cost-effective medicines is one of the ways NICE is delivering benefits for patients, the NHS and the life sciences industry.  The ILAP offers a genuine and significant opportunity to ensure new and innovative products reach patients across the UK, safer and quicker. The event was attended by 15 companies and 20 attendees and a vibrant discussion and debate ensued. 

In 2021 we have invested in streamlining membership renewal and have updated our Membership benefits offering.  A member’s survey was undertaken and partnership development meetings were held with each member company to better understand their needs and wishes in relation to Companies Forum and to inform future development.  There are 15 current company members of the Forum, three of which joined in 2021. Two patient group representatives are also honorary members to provide the patient voice at meetings. 

## **OTHER ACTIVITIES** 

## **Other events and communications** 

CRDN continued to take part in a wide range of events, editorial and awareness raising opportunities as speakers, media partners, chairs of panels, interviewees and writers. These events have spanned the pharmaceutical industry, patient groups, healthcare professionals and the public media. 

Grant funding from the Evolution Education Trust grant has underpinned a marketing plan over the financial year and supported our efforts to deliver on our charity objectives in a structured, impactful and meaningful way to encourage sustainable growth, reach new audiences, and better engage them. Developing our brand, our website and marketing materials for events has had significant impact. Increased visibility has led to many rich and productive conversations and resulted in increased collaborations and successful sponsorship funding.  Online donations to the charity have continued to rise, we have recruited three new Companies Forum members, and £163,501 income has been generated from sponsorship, grants, and donations in 2021. 

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## **CAMBRIDGE RARE DISEASE NETWORK** 

## **TRUSTEES ANNUAL REPORT FOR THE PERIOD ENDED 31 DECEMBER 2021** 

We continued to redevelop aspects of the CRDN website, creating mini-sites within the central platform for our major events, substantially advancing traffic to the site and event registrations.  Work was undertaken to improve the user experience for corporate visitors and local families, to build a more intuitive/searchable resources section, and to showcase the work we do, which will continue into 2022. Development of the CRDN website has led to 12,873 new users on the platform this year, with over 16,000 page visits during the peak three month marketing activity preceding our RAREsummit event. 

We invested in recording and editing of all RAREsummit21 live talks and panel discussions creating a legacy of rich content on our YouTube channel and website which showcases our work and continues to deliver impact.  This resource has increased our ability to educate and raise awareness on a much broader scale. 

Communications continue to be a central part of our work in advocacy, raising awareness, connecting the broader rare disease community and the public.  We were delighted to work with two new communications officers this year who are parents of children living locally with a rare condition.  They helped shape our social media and regional community communications, ensuring the patient voice is at the heart of our messaging. 

## **Partnerships and Patient Voice** 

Partnership highlights for 2021 include collaborative projects with the Eastern Academic Health Science Network, Prime Global People, Costello Medical and Medidata, as detailed earlier in the report.  We are delighted to continue collaborations with all of these organisations into 2022 as we strive to develop innovative and collaborative ways to improve the rare patient journey together. 

We strengthened relationships within our regional healthcare network, undertaking focus groups and holding discussions on patient passports, transitions to adult care and care coordination.  We look forward to circulating and finding ways to act on the final report developed by Costello Medical in partnership with CRDN and Findacure charity on transitions, due for publication in early 2022.  We are building a meaningful relationship with the Cambridge Children’s Hospital development team to ensure the new hospital, due to be built in 2025, meets the needs of children and young people with rare and undiagnosed conditions. 

We maintained relationships with corporate partners that have provided pro bono support to CRDN over the year and some financial assistance. Healx, Costello Medical Consulting, InterComm International and Prime Global People have all donated valuable skills, support and time to our work over this year in event planning, report writing and graphic design. 

Our Unique Feet families enjoyed supporting Cambridge based diagnostics company Illumina with an art project for Rare Disease Day and we have worked with the company on a short film telling the story of an ultra rare patient group, Ring20 Research and Support, and their collaboration with this tech giant Illumina on a two year project to unravel the Ring20 genome.  This project stemmed from CRDN’s RAREsummit19 when we invited the charity’s CEO to speak and pose the challenge of diagnosis of this complex condition to the audience. 

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## **CAMBRIDGE RARE DISEASE NETWORK** 

## **TRUSTEES ANNUAL REPORT FOR THE PERIOD ENDED 31 DECEMBER 2021** 

We continued our partnership with PharmaFocus and Pharmaphorum Magazines to bring monthly patient experience stories to their readership.  Recently we were delighted to hear that Timothy Syndrome Alliance group in the UK was contacted by a health professional in Australia about a family they had recently diagnosed with this condition after reading the patient insight article in PharmaFocus. The family have now been signposted to the community for support. 

We continued to work closely with a range of medical and genomics students from Cambridge University and further afield who supported our Rare Hospital Passport project and RAREsummit21 marketing, communications, and report writing. 

Our work relies on partnerships with other stakeholders within our network. We consolidated these friendships during the COVID-19 pandemic to establish the ARDEnt group mentioned earlier in this report which continues to attract new members and interest. 

It is also noteworthy that CRDN’s events rely on the support and collaboration of our many friends and partners throughout the rare disease world. At RAREsummit21, some 35 media partners, including leading rare disease charities from the UK, Europe and the US, Cambridge based Wellcome Genome Campus and Babraham Research Institute, and a wide range of companies joined our quest to raise awareness and promote this event. 

Overall, CRDN has continued to deliver clear and quantifiable benefits to a wide range of rare disease stakeholders.  Virtual platforms enabled a global reach for our events programme and communication campaigns. We have delivered more opportunities for cross-sector collaboration, which are beginning to provide real impact and outcomes.  Growth in demand for our local community services due to the isolation imposed on many through COVID-19 shielding has seen CRDN support an increasing number of families affected by rare conditions.  We welcomed more patient groups, companies, medical and scientific organisations into the network.  By refining the delivery of existing projects, whether empowerment, community building, or scientific, the charity has built a robust service offering with a strong reputation for patient engagement. 

This progress forms a strong foundation for securing more company funding partnerships grant funding in 2022 and increase our reach and engagement with rare disease stakeholders and the broader public in the UK and beyond. 

## **Financial Review** 

This is the 6th year of charity activity, and a lot was achieved, despite testing times. 

Funding continues to be mainly raised through corporate sponsorship and grant funding with a lesser but increasing amount through community fundraising and online donations.  Most paying Companies Forum members obtained membership through gold and diamond sponsorship packages for RAREsummit. 

The most significant contributors to income for this year’s charitable activities were for RAREsummit and grant funding from the Evolution Education Trust. 

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## **CAMBRIDGE RARE DISEASE NETWORK** 

## **TRUSTEES ANNUAL REPORT FOR THE PERIOD ENDED 31 DECEMBER 2021** 

A strategy day will be held in early 2022 to review the long term plan and fundraising strategy to achieve sustainable resources and facilitate growth.  This will build on the charity’s strengths in accessing sponsorship and community activity grants whilst formulating a three year plan to achieve a third of its funding through Companies Forum membership fees and events.  The charity is also exploring new opportunities for project-based grants and community fundraising to support its regional community group’s growth and next steps.  During this financial year, CRDN moved to a new accountant with specific expertise in charity finance. The Managing Director is responsible for the day-to-day running of finances, overseen by the Treasurer and trustee signatories during this financial year. Responsibility for payroll, pension payments, and quarterly management accounts now lies with Community 360 accounting following our move from Number Ninja accounting. 

## **Investment Policy** 

Aside from retaining a prudent amount in reserves each year, most of the charity's funds are spent in the short term, so there are no long-term investment funds.  If the funding position changes as the charity evolves, the management team will review the current investment policy. 

## **Reserves Policy** 

The charity's management team work to a policy whereby unrestricted funds not committed or invested in tangible fixed assets held by the charity should be a minimum of three months running costs.  The present level of cash available to the charity as of 31 December was £178,531. 

## **Structure, Governance and Management** 

## **Governing Document** 

The organisation is a charitable company limited by guarantee, incorporated on 28 September 2015 and registered as a charity on 5 April 2016. The company was established under a Memorandum of Association that established the charity company’s objects and powers and is governed under its Articles of Association. In the event of the company winding up, members must contribute an amount not exceeding £10. 

## **Trustee Induction and Training** 

Some of CRDN’s Trustees are involved as board members of other organisations and bring their previous experience and expertise.  There has been no change in the Trustee team over 2021.  New trustees with little prior experience of the role should attend CCSV Trustee training.  Following a revamp of the charity’s equality and diversity policy in 2020, the board will be exploring how to ensure an inclusive, representative and broad group of trustees at our strategy day.  In addition, they will undertake a skills audit of the Board to identify gaps how the can be addressed through Trustee recruitment. 

## **Organisation** 

The board of Trustees, which has no maximum number of members and is currently seven members administer the charity. The board has continued to meet six times a year. The Operations team, which consists of the Chair, one trustee and the Managing Director, meets more regularly to facilitate effective operations. 

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## **CAMBRIDGE RARE DISEASE NETWORK** 

## **TRUSTEES ANNUAL REPORT FOR THE PERIOD ENDED 31 DECEMBER 2021** 

## **Pay Policy for Senior Staff** 

It is the charity’s policy that Trustees give their time voluntarily and receive no benefit from the charity. Minimal travel expenses were reclaimed from the charity by one trustee in the last financial year.  CRDN currently has one employed member of staff, the Managing Director.  We pay for all other services at agreed contracted rates. 

## **Risk Management** 

As CRDN is still in its early years, the risks it is exposed to should be at a minimum as committed spend and running costs are still relatively low. However, we expect this to increase in the next couple of years. A financial software package was implemented in 2016 to support the charity's growth, aiming to help manage its increasing transaction complexity. 

CRDN had a successful year financially but further work is needed to ensure continued stability and growth in the coming financial year.  Two year seed funding from the Evolution Education Trust to cover the full-time employment of the Managing Director came to an end in autumn 2021. Hence, a plan for sustainable funding through Companies Forum, corporate partnerships, and project grant funding to cover this is essential. 

## **Responsibilities of the Trustees** 

The Trustees (who are also directors of Cambridge Rare Disease Network for the purposes of company law) are responsible for preparing the Trustees' Report and the financial statements following applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice). 

Company law requires the Trustees to prepare financial statements for each fiscal year. Under company law, the Trustees must not approve the financial accounts unless they are satisfied they give an accurate and fair view of the state of affairs of the charitable company for that period - specifically its incoming resources and application of these. 

In preparing these financial statements, the Trustees are required to: 

- select suitable accounting policies and then apply them consistently; 

- observe the methods and principles in the Charities SORP; 

- make judgments and accounting estimates that are reasonable and prudent; 

- state whether applicable UK Accounting Standards have been followed, subject to 

- any material departures disclosed and explained in the financial statements; 

- prepare the financial reports on the going concern basis unless it is inappropriate to presume that the charitable company will continue in operation. 

The Trustees are responsible for keeping adequate accounting records sufficient to show and explain the charitable company's transactions and disclose with reasonable accuracy at any time the financial position of the charitable company. They must ensure that the financial statements comply with the Companies Act 2006. Trustees 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. 

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## **CAMBRIDGE RARE DISEASE NETWORK** 

## **TRUSTEES ANNUAL REPORT FOR THE PERIOD ENDED 31 DECEMBER 2021** 

This report is approved by the Trustees and signed on their behalf by: 

Dr Gemma Chandratillake 

Chair and trustee                                     Date 15th March 2022 


## **Organisation Details** 

Registered Office: Bcs Windsor House, Station Court, Station Road, Great Shelford, CB22 5NE 

Registered Company Limited by Guarantee 9798317- Registered on 28[th] September 2015 Registered Charity number-1166365- Registered on 5[th] April 2016 

## **Trustees** 

Prof Alan Walter Barrell (appointed 28/09/2015 - resigned 03/12/2019) 

Dr Tim Guilliams (appointed 28/09/2015) 

Dr Sarah Leiter (appointed 05/06/2017) 

Dr Gemma Chandratillake (appointed 15/05/2017 - appointed Chair 03/12/2019) 

Dr Ron Jortner (appointed 23/01/2019) 

Dr Jonathan Milner (appointed 23/01/2019) 

Mrs Susan Berry (appointed 29/07/2019) 

Prof Tim Cox (resigned 03/12/19) 

Ilan Chaitowitz (appointed 03/12/2019) 

## **Management and Operations** 

Managing Director – Jo Balfour (employed) 

Events and Marketing Executive – Lindsey Brown (contracted) 

Graphic and web design – Suzanne Morris (contracted) 

Communications support – Creative Warehouse (contracted) 

Social media - Vaila Morrison  (contracted) 

IT support – George Nicolau (contracted) 

ARDEnt COVID Impact report - Keele Uni Interns and Intercomm International Ltd (pro bono) Rare Patient Passport and Transition to adult care reports - Costello Medical (pro bono) Company Secretary - BCS Accounting Ltd 

**13** 



## **CAMBRIDGE RARE DISEASE NETWORK** 

## **TRUSTEES ANNUAL REPORT FOR THE PERIOD ENDED 31 DECEMBER 2021** 

Accounting - Emma James, Number Ninja (Sept 2020 - Dec 2020), Community 360 (Jan 2021 - present) Independent Accounts Review - Community360 

**14** 



## **CAMBRIDGE RARE DISEASE NETWORK** 

## **STATEMENT OF FINANCIAL ACTIVITIES FOR THE YEAR ENDED 31 DECEMBER 2021** 

|**Notes**<br>**Incoming resources**<br>**Incoming resources from generating funds:**<br>Donations and legacies<br>**2**<br>Charitable activities<br>**3**<br>**Total incoming resources**<br>Charitable activities<br>**4**<br>**Total charitable expenditure**<br>**Net incoming/(outgoing) resources before transfers**<br>Transfer between funds<br>Previous year adjustment<br>**Fund balances at 1 October 2020**<br>**Fund balances at 31 December 2021**<br>**Net income/(expenditure) for the year/ Net**<br>**movement in funds**<br>**Resources expended**|**Unrestricted **<br>**funds**<br>**£**<br>10,534<br>123,523|**Restricted**<br>**funds**<br>**£**<br>500<br>28,945|**2021**<br>**Total**<br>**£**<br>11,034<br>152,468|**2020**<br>**Total**<br>**£**<br>82,846<br>79,665|
|---|---|---|---|---|
||**134,056**|**29,445**|**163,501**|**162,511**|
||32,054|71,157|103,210|164,179|
||**32,054**|**71,157**|**103,210**|**164,179**|
||**102,003**<br>-<br>-<br>102,003<br>76,528|**(41,712)**<br>-<br>1,355<br>(40,356)<br>54,273|**60,291**<br>-<br>1,355<br>61,646|**(1,667)**<br>-<br>-<br>(1,667)<br>132,469|
||||130,801||
||||||
||**178,531**|**13,917**|**192,447**|**130,801**|



The Statement of Financial Activities includes all gains and losses recognised in the year. 

The notes on pages 7-11 form part of these financial statements. 

**15** 



## **CAMBRIDGE RARE DISEASE NETWORK** 

## **BALANCE SHEET AS AT 31 DECEMBER 2021** 

|||**2021**||**2020**||
|---|---|---|---|---|---|
||**Notes**|**£**|**£**|**£**|**£**|
|**Current assets**||||||
|Debtors|**6**|5,771||10,121||
|Cash at bank and in hand||189,891||131,708||
|||195,662||141,829||
|**Creditors: amounts falling due within one year**|**7**|(3,215)||(11,028)||
|**Net current assets**|||192,447||130,801|
|||||||
|**Total net assets**|||**192,447**||**130,801**|
|**Income funds**||||||
|Restricted funds|**9**||13,917||54,273|
|Unrestricted funds|||178,531||76,528|
||||**192,447**||**130,801**|



The Charity was entitled to exemption from audit under section 477 of the Companies Act 2006. 

The members have not required the company to obtain an audit in accordance with section 476 of the Companies Act 2006. 

The Trustees acknowledge their responsibilities for complying with the requirements of the Act with respect to accounting records and preparation of financial statements. 

The financial statements have been prepared in accordance with the provisions applicable to entities subject to the small companies regime. 

The financial statements were approved and authorised for issue by the Trustees on …15.7.22…………… ………..and signed on their behalf by: 

Signed 


> Date 15.7.22 

Dr Gemma Chandrtillake 

The notes on pages 7 - 11 form an integral part of these financial statements. 

**16** 



## **CAMBRIDGE RARE DISEASE NETWORK** 

## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021** 

## **1 Accounting Policies** 

## **1.1 Basis of accounting** 

The financial statements have been prepared in accordance with Accounting and Reporting by Charities: Statement on Recommended Practise 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 2019) - (Charities SORP (FRS 102)), the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) and the Companies Act 2006. 

Cambridge Rare Disease Network meets the definition of a public benefit entity under FRS 102. Assets and liabilities are initially recognised at historical cost or transaction value unless otherwise stated in the relevant accounting policy. 

There were no significant estimates or judgements made by management in preparing these financial statements. 

## **1.2 Going concern** 

The trustees have reviewed the financial position of the charity and have a reasonable expectation that the Charity has adequate resources to continue in operation existence for the foreseeable future. Accordingly, the financial statements continue to be prepared on the going concern basis. 

## **1.3 Company status** 

The Charity is a company limited by guarantee. The members of the Charity are the Trustees named on page 1 and those organisations and individuals who have been invited to become members and where relevant have paid the membership fee. In the event of the Charity being wound up, the liability in respect of the guarantee is limited to £10 per member of the Charity. 

## **1.4 Income** 

All income is recognised once the Charity has entitlement to the income, it is probable that the income will be received and the amount of income receivable can be measured reliably. 

Income from government and other grants, whether "capital" grants or "revenue" grants, is recognised when the charity has entitlement to the funds, any performance conditions attached to the grants have been met, it is probable that the income will be received, and the amount can be measured reliably and is not deferred. Income received in advance of a Conference or provision of other specified service, is deferred until the criteria for the income recognition are met. 

Donations are recognised when received. Sponsorship income is recognised in relation to the specific events, such as the Internation Summit or RAREfest. Amounts are included as debtors if owing to the charity at the period end or carried forward in creditors if received in advance. 

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

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

**17** 



## **CAMBRIDGE RARE DISEASE NETWORK** 

## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021** 

## **1.5 Fund accounting** 

General funds are unrestricted funds which are avaliable for use at the discretion of the Trustees in furtherance of the general objectives of the Charity and which have not been designated for other purposes. 

Restricted funds are funds which are to be used in accordance with specific restrcitions imposed by donors or which have been raised by the Charity for particular purposes. The costs of raising and administering such funds are charges against the specific fund. The aim and use of each restricted fund is set out in the notes to the financial statements. 

## **1.6 Expenditure** 

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

Expenditure on charitable activities is incurred on directly undertaking the activities which further the Charity's objectivies, as well as any associated support costs. 

All expenditure is inclusive of irrecoverable VAT. 

## **1.7 Debtors** 

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

## **1.8 Cash at bank and in hand** 

Cash at bank and in hand includes cash and short-term highly liquid investements with a short maturity of three months or less from the date of acquistion or opening of the deposit or similar account. 

## **1.9 Liabilities and provisions** 

Liabilities are recognised when there is an obligation at the Balance Sheet date as a result of a past event, it is probable that a transfer of economic benefit will be required in settlement, and the amount of the settlement can be estimated reliably. 

Liabilities are recognised at the amount that the Charity anticipates it will pay to settle the debt or the amount it has received as advanced payments for the goods or services it must provide. 

## **1.10 Financial instruments** 

The Charity only has financial assets and financial liabilities of a kind that qualify as basic financial instruments. Basic financial instruments are initially recognised at transaction value and subsequently measured at their settlement value. 

## **1.11 Tangible fixed assets and depreciation** 

Tangible fixed assets are initially recognised at cost. After recognition, under the cost model, tangible fixed assets are measured at cost less accumulated depreciation and any accumulated impairment losses. All costs incurred to bring a tangible fixed asset into its intended working condition should be included in the measurement of cost. 

Depreciation is charges so as to allocate the cost of tangible fixed assets less their residual value over their estimated useful lives, using the straight-line method. 

**18** 



## **CAMBRIDGE RARE DISEASE NETWORK** 

## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021** 

|**2**<br>**Donations and legacies**<br>**Unrestricted**<br>**Funds**<br>Donations and gifts<br>10,534<br>**10,534**<br>TOTAL 2020<br>**11,867**<br>**3**<br>**Charitable activities**<br>**Unrestricted**<br>**Funds**<br>Delegate Sales<br>15,000<br>Grants<br>-<br>Sponsorship<br>95,000<br>Other<br>13,523<br>**123,523**<br>TOTAL 2020<br>**53,298**<br>**4**<br>**Resources expended**<br>**Unrestricted**<br>**Funds**<br>Staff costs<br>4,276<br>Depreciation<br>-<br>Accomodation<br>33<br>Admin support<br>652<br>Advertising & marketing<br>22,141<br>Accountancy fees<br>300<br>Bank fees<br>66<br>Consulting<br>-<br>General expenses<br>77<br>Independent examination<br>-<br>Insurance<br>528<br>IT software & consumables<br>963<br>Legal expenses<br>-<br>Postage, freight & courier<br>19<br>Staff training<br>-<br>Subscriptions<br>493<br>Travel<br>167<br>Venue & catering<br>114<br>Website design & admin<br>2,225<br>**32,054**<br>TOTAL 2020<br>**44,723**|**Restricted**<br>**Funds**<br>500|**2021**<br>**Total**<br>**£**<br>**11,034**<br>**11,034**<br>**82,846**<br>**2021**<br>**Total**<br>**£**<br>15,000<br>28,945<br>95,000<br>13,523<br>**152,468**<br>**79,665**<br>**2021**<br>**Total**<br>**£**<br>53,371<br>-<br>33<br>6,420<br>27,487<br>1,655<br>66<br>-<br>150<br>-<br>528<br>1,223<br>-<br>19<br>173<br>493<br>276<br>4,145<br>7,171<br>**103,210**<br>**164,179**|**2020**<br>**Total**<br>**£**<br>**66,415**|
|---|---|---|---|
||**500**||**66,415**|
||||**2020**<br>**Total**<br>**£**<br>4,179<br>26,898<br>48,000<br>587|
||**70,979**|||
||**Restricted**<br>**Funds**<br>-<br>28,945<br>-<br>-|||
||**28,945**||**79,665**|
||||**2020**<br>**Total**<br>**£**<br>59,651<br>-<br>62<br>12,517<br>20,858<br>10,470<br>93<br>20,664<br>40<br>3,426<br>840<br>1,725<br>356<br>603<br>340<br>382<br>2,129<br>21,666<br>8,356|
||**26,366**|||
||**Restricted**<br>**Funds**<br>49,095<br>-<br>-<br>5,768<br>5,346<br>1,355<br>-<br>-<br>73<br>-<br>-<br>260<br>-<br>-<br>173<br>-<br>109<br>4,030.82<br>4,946|||
||**71,157**||**164,179**|
|||||
||**119,456**|||



**19** 



## **CAMBRIDGE RARE DISEASE NETWORK** 

## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021** 

|**5 Staff costs**<br>Wages and salaries<br>Pension costs|**2021**<br>**Total**<br>**£**<br>52,068<br>1,303|**2020**<br>**Total**<br>**£**<br>58,159<br>1,492|
|---|---|---|
||**53,371**|**59,651**|



The average number of persons employed by the Charity during the year was as follows: 

|Employees|**2021**<br>**No.**|**2020**<br>**No.**|
|---|---|---|
||1|**1**|



No employee received remuneration amounting to more than £60,000 in either year. 

Key management personnel of the charity comprises of the trustees. The trustees have all given their time and expertise without any kind of remuneration or other benefit in kind. During the year, Dr Ron Jortner received reimbursement of expenses totalling £26.44 (2020: no trustees/£Nil). 

|**6 Debtors**<br>**DUE WITHIN ONE YEAR**<br>Trade debtors<br>Prepayments and accrued income|**2021**<br>**Total**<br>**£**<br>5,650<br>121|**2020**<br>**Total**<br>**£**<br>10,000<br>121|
|---|---|---|
||**5,771**|**10,121**|



**20** 



## **CAMBRIDGE RARE DISEASE NETWORK** 

## **NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021** 

|**7**<br>**Creditors: amounts falling due within one**<br>Trade creditors<br>Other creditors<br>Accruals and deferred income<br>**8**<br>**Deferred income analysis**<br>Deferred income at 1 October 2020<br>Resources deferred during the year<br>Amounts released from previous periods<br>**9**<br>**Statement of funds**<br>**Balance at 1**<br>**October**<br>**2020**<br>**£**<br>**UNRESTRICTED FUNDS**<br>General funds - all funds<br>76,528<br>**RESTRICTED**<br>National Lottery<br>8,913<br>Evolution Edication Trust<br>(marketing)<br>Evolution Edication Trust<br>(operations)<br>CCF<br>431<br>People's Health<br>-<br>Unique Feet<br>130<br>**Total restricted funds**<br>**54,273**<br>**Total funds**<br>130,801<br>2,749<br>42,050|**year**<br>**Income**<br>**£**<br>134,056<br>-<br>-<br>845<br>3,600<br>**29,445**<br>163,501<br>-<br>25,000|**Expenditure**<br>**£**<br>32,054<br>4,368<br>402<br>-<br>272<br>**69,408**<br>101,462<br>15,618<br>48,749|**2021**<br>**Total**<br>**£**<br>1,614<br>1,301<br>300<br>**3,215**<br>**2021**<br>**Total**<br>**£**<br>5,420<br>-<br>(5,420)<br>**-**<br>**Transfers**<br>**In/out**<br>**£**<br>-<br>-<br>-<br>**-**<br>-<br>-<br>-|**2020**<br>**Total**<br>**£**<br>1,429<br>389<br>9,210|
|---|---|---|---|---|
|||||**11,028**|
|||||**2020**<br>**Total**<br>**£**<br>5,420<br>5,821<br>(5,420)|
|||||**5,821**|
|||||**Balance at 30**<br>**December**<br>**2021**<br>**£**<br>178,531|
|||||4,545<br>29<br>845<br>3,458<br>12,131<br>6,699<br>-|
|||||**14,310**|
||||||
|||||192,840|



## **Purpose of funds** 

**National Lottery** - this grant was awarded to support CRDN's regional community group activities and coordination. 

**21** 



**CAMBRIDGE RARE DISEASE NETWORK** 

**NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED 31 DECEMBER 2021 Draft as at 14th July 2022** 

**Evolution Education Trust (marketing)** - the purpose of this grant is to support the complex marketing strategy involved in promoting, delivering and reaching as many people as possible with CRDN's awareness-raising events and education programme. The bulk of the funds cover the cost of a marketing professional, a graphic and web designer and communication/copy-writing professionals to undertake the design of a wide range of marketing materials for print and social media/online, the design and management of our website, the writing and design of our blogs and newsletters and events materials. Funds are also allocated to the printing of marketing materials, paid advertising for events and funding CRDN to attend and exhibit at other events for networking and marketing purposes. purposes. 

**Evolution Education Trust (operations)** - the purpose of this donation is to fund the full-time employment of the Operations Manager of the charity to allow the charity a period of stability and time to generate more regular sources of income. The funds also fund the Operations manager's training and attendance at relevant conferences and events in order to raise the profile of the charity. 

## **10 Analysis of net assets between funds** 

|Fund balances at 31 December 2021 are represented  by:<br>Current assets<br>Creditors: amounts falling due within one year|**Unrestricted**<br>**funds**<br>**2021**<br>**£**<br>98,638<br>(3,215)<br>**95,423**|**Restricted**<br>**funds**<br>**2021**<br>**£**<br>13,917<br>-<br>**13,917**|**Total**<br>**2021**<br>**£**<br>112,555<br>(3,215)|
|---|---|---|---|
||||**109,340**|



Restricted funds represent amounts received for specific projects. 

## **11 Related party transactions** 

In this financial period, CRDN paid BCS (directors are daughter and son-in-law of Trustee Alan Barrell) £180 (2020: £9,383) for consultancy work. Quotes were obtained, and Prof Barrell was not included in making the decision of placing this piece of work with this provider. 

CRDN paid Emily Leslie (wife of Trustee Tim Guilliams) £Nil (2020: £800) for Yoga classes for the Unique Feet group. The decision to use Emily was done at operational level. Emily had previously worked with the Unique Feet Children and the rate paid was a reduced market rate. 

In this financial period, CRDN received a restricted grant from Evolution Education Trust for £25,000 (2020: £65,200) One of the trustees of Evolution Education Trust, Dr J S Milner is also a trustee of CRDN. 

**22**