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2024-03-31-accounts

CIO

Trustees report and Financial Statements for the period

1 April 2023 to 31 March 2024

Registered Charity 1198883

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EOS Network Eosinophilic Diseases Charity

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||| |---|---| |Contents|Page| |Report of the Trustees|2 - 15| |Statement of Financial Activities|16| |Balance Sheet|17| |Notes to the Financial Statements|18 - 20| |21|

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EOS Network Eosinophilic Diseases Charity

report

For the period ended 31 March 2024

The Trustees present their annual report and financial statements of EOS Network - Eosinophilic Diseases Charity for the period ended 31 March 2024

REFERENCE AND ADMINISTRATIVE INFORMATION

Charity name: EOS Network Eosinophilic Diseases Charity

Charity Registration Number: 1198883 Trustees: Amanda Cordell Bernard Michael McGrath Mark Nicholas Boulding Philippa Rosemary Dennitts David Cordell Lesley Perkin (joined 2[nd] February 2024) Bankers: NatWest Bank Plc Administrative address: Alpenrose Weeley Road Great Bentley Colchester CO7 8PD Independent Examiner: Simon Robinson SAS Accounting Services Ltd The Colchester Centre Hawkins Road Colchester CO2 8JX

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EOS Network Eosinophilic Diseases Charity

report (continued)

Act 2011 and the Charity SORP 2005.

1. Structure, governance, and management

The governing document

The Charity EOS Network was constituted as a Charitable Incorporated Organisation (CIO) on 5[th] May 2022.

30[th] March 2023 The governing document and name of the Charity was updated to EOS Network Eosinophilic Diseases Charity for the benefit of increasing public awareness.

Organisational structure and management

EOS Network is governed by its Trustee Board which is responsible for setting the strategic direction of the organisation and the policy of the charity. Trustees meet as a minimum four times per year and review operational, financial and strategic progress at these meetings.

Trustees

The Trustees holding office during the period and up to the date of this report (unless otherwise stated) are:

Amanda Cordell Bernard Michael McGrath Mark Nicholas Boulding Philippa Rosemary Dennitts David Cordell Lesley Perkin (joined 2nd February 2024)

Recruitment and appointment of Trustees

The trustees are appointed by the governing document. Future trustees may be appointed by a resolution of the trustees passed at a meeting of the of the trustees.

Trustee induction and training

Trustees are selected for their expertise that is relevant to the charity, so that a wide knowledge base can be brought to bear on fundraising, finance and administration. Each year the Trustees

Law applicable to charities in England and Wales requires the trustees to prepare financial during the year and of its financial position at the end of the year. In preparing the financial statements giving a true and fair view, the trustees should follow best practice and:

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The trustees are responsible for keeping accounting records which disclose with reasonable accuracy the financial position of the charity, and which enable them to ensure that the financial statements comply with the Charities Act. They are also responsible for safeguarding the assets of the charity and hence, for taking reasonable steps for the prevention and detection of fraud and other irregularities. They are required to apply the funds of the charity with complete fairness to meet the objects of the charity.

Investment powers and policy

The governing document grants unrestricted powers of investment to the trustees.

Risk management

The Trustees consider the charity is exposed to little risk, but this position is periodically reviewed and documented.

2. Objectives and activities

The objects of the CIO are:

The relief of sickness and the preservation of health among people with Eosinophilic-Associated Diseases, and by extension their families and carers, in particular, but not exclusively by:

(a) Advancing the education of the general public and the medical profession in all areas relating to Eosinophilic-Associated Diseases;

(b) Providing relief to and promoting the good physical and mental health of persons diagnosed with Eosinophilic-Associated Diseases, and by extension their families and carers through a community hub and the provision of resources, advice, guidance and events; and

3. Public benefit statement

EOS Network operates for public benefit. The trustees confirm that they complied with the duty in Section 17 of the Charities Act 2011 to have due regard to the general guidance on public benefit, Charites

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4. Achievement and performance during the period 1[st] April 2023 to 31st March 2024

The EOS Network CIO was incorporated on 10[th] May 2022, as a successor organisation of registered charity 1143267 unincorporated association of the same name.

In 2020 the trustees identified five Critical Success Factors (CSFs)

Some notable achievements are listed below, grouped by Critical Success Factor.

With our Communications Officer in post, we were able to provide consistent social media and grow our web presence substantially. We shared 665 media posts, reaching 83,000 users and gaining 805 new followers.

Our Ambassador, professional footballer Sean Goss, was featured in our Eosinophilic Awareness Month content, and has given confidence to young people and adult members of our community, about what is achievable when EoE is well-managed.

Despite analytical updates to Google and other service providers reducing reportable data we were delighted to see continued growth in demand for our services demonstrated with 46K new website visitors and over 1000 downloads .

April 2023-March 2024 downloads statistics, Google Analytics

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We kept the interest of new and old visitors by publishing 40 new pages on our website , sharing six community E journeys, providing downloadable tools and links to our video educational resources which received 7500 views . Empowering our community to live well with their diseases and enabling the confidence to advocate for themselves.

Community members participated in Eosinophilic Voices project

We continued to provide one-to-one telephone support to new and existing registrants. This was supplemented by regular community newsletters that achieved up to an open rate of 58% and a click-through rate of 38% - way exceeding industry norms.

During our regular social Community Online Chat sessions, members were able to meet others living with the same challenges, build friendships and continue to shape the focus of our strategy using a new collaborative tool to gather insights on our needs .

Wellbeing Wednesday: November Community Chat. Working collaboratively with community

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2) Educate multiple stakeholders to shorten time to diagnosis and improve long term management

The focus of our Eosinophilic Awareness Month activity was our . Alongside intensive social media communications for healthcare professionals, we distributed information packs designed for frontline professionals who are non-specialists and may not always consider the possibility of eosinophilic disease in the patients they see. Half of these packs were distributed by volunteers from our community, educating professionals and empowering the community at the same time.

One of our fundraisers and advocates, Penny, disseminating Info Packs

Our CEO is now in demand from the professional community as a co-author and was named as such in six publications during the year, including practical, evidence-based guidance by the BSPGHAN (British Society for Paediatric Gastroenterology, Hepatology and Nutrition) Eosinophilic Oesophagitis Working Group on swallowed topical steroid therapy for eosinophilic oesophagitis in children. We also collaborated with BSPGHAN on surveying issues with transition from paediatric to adult services , a point at which effective long-term management can break down.

We deepened our relationships with multiple healthcare companies with treatments in development which may be of benefit to our community, to ensure that their trials design, regulatory approval plans and medical education support were appropriate to meet the needs of patients.

With huge variance of available treatments depending on the patient's location, we continued to advocate to multiple stakeholders and providers to improve global access for all affected.

Our professional publications activity during the year included a number of topics supporting multidisciplinary management, including alternative treatment approaches, and frequency of vitamin deficiencies.

Capitalising on the publication of the EoE BSG / BSPGHAN Guidelines, we advocated to the clinical community for accelerated standardisation of appropriate care, so that patients receive a prompt accurate diagnosis and the treatment which is right for them.

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We attended 24 professional meetings worldwide , either in person or virtually, including CEGIR, BSACI, UEG, BSPGHAN, NICE, ERNICA, EUREOS, Beacon, Genetic Alliance and CVST.

,

Speaking with established healthcare professionals and young trainees

working in the field of eosinophilic diseases

We enabled the communities voice in ongoing research to improve diagnostic and management sponge on a string test for EoE through Patient Participation and Involvement Focus Groups in collaboration with Cyted.

Sarah Killcoyne demonstrating sponge-on-a-string testing device during our QuBIE Study meeting

We recruited a new Trustee, Lesley Perkin, who has decades of experience of working in the NHS to improve the effectiveness of multi-disciplinary working, and will guide our activity in this area.

We collaborated with other patient organisations and leading clinicians around the world to identify unmet needs for high quality care among people living with Eosinophilic-Associated Diseases. We partnered in developing and disseminating a multi patient advocacy organisation awareness video produced for the first agreed World EOS Day 18[th] May

As patient advocates, we attended a round table meeting organised by the company Sanofi on improving patient access to innovative medicines.

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Eosinophilic Gastrointestinal D

currently less well understood and defined than EoE, but we continued to make them a priority, as en more acute and under-served.

We attended regular meetings of CEGIR, the leading global consortium for exchanges about lower EGIDs, and cascaded research news to our EOS professionals' network . We also used CEGIR information to develop a set of patient-friendly FAQ answers on topics requested by our community.

One of the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) meetings with healthcare professionals and patients advocates representatives

Published our first podcast with guest speaker from Cincinnati Centre for Eosinophilic Diseases making the subject of research in genetics for EGIDs available to our community.

Our CEO co-authored a publication on early life exposures as risk factors for non-oesophageal eosinophilic gastrointestinal diseases through EGID partners data collection.

We continued to engage with a number of pharmaceutical companies with products in development which show possible promise for lower EGIDs, to ensure that lower EGIDs are included in their clinical trial and medical education programmes relating to the spectrum of Eosinophilic-Associated Diseases (EADs).

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During the period, we migrated our registration records to This will transform our ability to provide tailored information and support to our patient and professionals communities, with the quality we have always provided, but also at the scale at which we now work. This also enables us to provide improved consistent support to our valued fundraisers, volunteers and donors.

EOS Network Community Support -

We also transitioned to Microsoft 365 and Adobe Creative Cloud , which will enable our growing team to work together to produce high quality content more quickly.

With thanks to our supporters LLP, Dechert LLP and Pilsbury Winthrop Shaw and Pittman LLP for providing the valuable donated in-kind legal services during the development of new systems and GDPR policy.

We gratefully recruited several new volunteers , bringing lived experience of eosinophilic diseases along with fresh skills in campaigning, fundraising, design and events management.

We increased our income significantly (see Financial Review section 5), diversifying our income sources which makes our financial position more resilient. Our community fundraising grew substantially, which not only brings in additional funds, but also allows us to grow our profile.

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6. Financial review

i. Results for the period

Income for the year was £205,688 which includes £127,921 in respect of donated services an equivalent amount is included resources expended. Expenditure for the year was £238,038 resulting in a deficit of £32,350 and with reserves of £76,016 brought forward from 2023 reserves at the end of the year were £43,666

EOS Network Fundraisers and Volunteers

We are thankful for the continued dedicated support of volunteers, community fundraisers and the generosity of our donors and corporate sponsors without whom our achievements would not have been possible.

Grants and Donations were gratefully received from the following corporate supporters: Google, Dechert LLP, , Astra Zeneca and Dr Falk Pharma.

i. Reserves

to provide fixed and working capital; to provide for future contingencies; and to provide a base for

The charity has financial reserves that can be a combination of restricted and unrestricted reserves. Restricted reserves are funds that have been given for a specific charitable purpose.

The Trustees consider that the available reserves (i.e liquid and readily realisable assets, excluding restricted funds represented in these assets) should be maintained in a range between three and six months of operational expenditure.

The Trustees also recognise that owing to the need for resources to be used to finance planned expansion, there may be periods when reserves cannot be maintained within these limits, however sufficient reserves shall be maintained to cover known commitments. The reserve levels required under the reserves policy will be kept under review.

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7. Future Plans for 2024-26

During 2023-24, we refreshed the strategy which had been in place since 2021. Much has changed during this time, as EoE has become better recognised, and research has highlighted the interconnectivity of many eosinophilic associated diseases (EADs), within and beyond the gastrointestinal tract. Our new strategy will address the following key issues:

  1. Emerging scientific evidence in EADs is yet to be translated into robust clinical evidence

There is growing recognition in specialist/research centres, of the complexity of eosinophilicassociated disease models. This needs to be corroborated in robust clinical evidence, to drive changes in routine practice.

  1. Multi-disciplinary care has not yet caught up with advances in scientific understanding of EADs

Our understanding of eosinophilic-associated diseases is improving. We now know that some patients experience multiple EADs affecting different body systems, while many others are affected by concomitant diseases (often atopic), which can be important flags for prompt diagnosis and also require treatment. However, this raises the bar of effective ongoing multidisciplinary leadership and collaboration in traditional specialty-based healthcare provider structures.

  1. Our patient-carer community needs far more than just information about their chronic disease

To live their best lives in existing healthcare systems, patients and carers need to be able to selfadvocate. This requires skills and support structures, as well as factual information about their EADs and the concomitant conditions which should trigger appropriate investigations by HCPs.

  1. Our recent growth in reach and capacity necessitates increased sustainable funding

To reach more people and drive greater change, we have invested in paid staff and need to be able to maintain that commitment. Furthermore, to make full use of the opportunities we have unlocked (especially with our CRM system), we need to increase our funding as well as ensuring it is sustainable.

We have set four new strategic goals to address these issues, which we will work towards in 202426:

Goal 1: Improve real world EAD impact evidence

We will gather more data from patients and HCPs, on the experience, diagnosis and treatment of EADs and concomitant diseases, with a gastro-intestinal component, in a structured way and on a global scale. Developing robust multiple systemic diseases evidence, to improve patient outcomes through holistic understanding, research, treatments and practices.

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2024/26 priority activities for Goal 1

  1. Continue to maintain and develop EOS Network community registration CRM data and participate in collaborative projects

  2. Develop patient registry project plan and secure funding

  3. Recruit a steering committee to map the registries key aims, scope, content, control and management

  4. Select a suitable provider, to build the patient registry

  5. Form a robust plan to secure ongoing patient registry funding

Goal 2: Build Bridges

We will foster models of multi-disciplinary collaboration between specialties and across paediatric and adult services, to improve diagnosis and management of EADs which have a gastro-intestinal component, and concomitant diseases.

2024/26 priority activities for Goal 2

  1. Advocate for standardised optimal cohesive care and research within medical bodies and other stakeholders as official EAD patient representation

  2. Deliver a pilot project using electronic health care records to demonstrate the massive underdiagnosis of EoE in the UK and develop tools to transform it

  3. Expand our website content on EADs and concomitant diseases

  4. Run a webinar series for HCPs on the interconnected symptomatology and pathology of EADs, looking beyond their own specialisms

  5. Plan a conference on leading/achieving system change for EADs management in both adult and paediatric services

Goal 3: Empower patients & carers

We will empower patients and carers living with EADs which have a gastro-intestinal component to get what they need from their healthcare providers.

2024/26 priority activities for Goal 3

  1. Provide educational information for EAD patients/carers on their disease and the relevance of any concomitant symptoms, through a leaflet and our website

  2. Develop a practical tool to help patients communicate the overall picture of their symptoms to their HCPs

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  1. Run a patient/carer community event (in person or online) to connect people, deepen their understanding of how to navigate the challenges of their healthcare system, and launch our new resources

  2. Focus Eosinophilic Awareness Month on raising awareness amongst patients, carers and HCPs of EADs and concomitant diseases

5. Recruit a paid Community Officer to maximise the reach and impact of these initiatives, and provide increased personalised support to patient/carer Community members

Goal 4: Increase sustainable funding

We will increase and diversify our income and make it more sustainable.

2024/26 priority activities for Goal 4

  1. Allocate specific staff resource to increase our level of targeted fundraising activity

  2. Diversify our fundraising efforts to include Trusts & Foundations, and Community fundraising

  3. Deepen and broaden our engagement with actual/potential pharmaceutical company funders

  4. Seek multi-year funding commitments to enable longer term projects such as our Registry.

Approved by the Trustees on

and signed on their behalf by

Chair of Trustees

Amanda Cordell

Treasurer and Trustee

Bernard McGrath

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EOS Network- Eosinophilic Diseases Charity Mar-24 MaT-24 Mar-24 Mar-23 Mar-23 Mar-23 Not• Vnrvstrlrted R¢stTlded Total Unro$trfrtvdRv$trJrt¢d Total Incomlni resources Intome resources from generated funds.. Voluntary incorne t)onaiion5 Corporale funding Donated services other income Other-transfer from E05 Network Total IncomlnK resources 9,162 65.(KXS 127,921 3.￿>5 9,162 65.￿) 127.921 3.EQ5 37,500 52,299 37,5CKJ 52,299 42,524 151.140 2,530 45,054 1530 153.670 205.688 0 205.688 Resources expeneed Cost of generating funds Charitsble activities Donated service5 Total rtsourcts expended 8.576 99,011 127,921 235.508 2.530 11.IOS 99,011 127,921 2.530 238,038 24,295 52,299 77,654 24,295 52,299 Tl,654 Net rno¥•ment In fund$ 129.8201 12,5301 132,3501 73.4186 2.530 76.016 Recondllatlon of funds Funds blfvid l April 2023 73,486 2,530 76,016 Funds ¢¥iFfjod lo¥w¥rd at 31 Marth 2024 43.666 43,666 73.486 2.530 76.016 16

EOS Network Eosinophilic Diseases Charity

These financial statements were approved by the board

and signed on its behalf by

Chair of Trustees

Amanda Cordell

Treasurer and Trustee

Bernard McGrath

Date:

Charity Number 1198883

The notes on pages 18 to 20 form an integral part of these financial statements

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EOS Network Eosinophilic Diseases Charity

Notes to the financial statements

For the year ended 31 March 2024

1) Accounting policies

I. Basis of preparation

The financial statements have been prepared in accordance with the Statement of Recommended Practice for Charities (SORP 2025), (Second Edition, effective January 2019), the Charities Act 2011 and applicable accounting standards (FRS102).

i. Accounting convention

The accounts are prepared under the historical cost convention.

ii. Donations receivable

Donations are credited to income when received.

iii. Tangible fixed assets and depreciation

IT equipment 33% straight line

2) Donated services

During the period the Charity received pro-bono legal services and a google grant to the value of £127,921 which are shown within incoming resources under donated services in the statement of financial activities. An equivalent amount of expenditure of £127,921 is shown under resources expended within the statement of financial activities.

3) Payments to Trustees

During the year Amanda Cordell a Trustee, in her capacity as Chief Executive, received remuneration of £48,464 and reimbursed expenses of £463.69 This employment was approved by the Charity Commission.

4) Governance cost

Trustees received no remuneration in their role as trustees.

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5) Tangible Fixed Assets

6) Staff Costs

7) Cost of Raising Funds

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8) Resources Expended

2024 2023

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EOS Network Eosinophilic Diseases Charity

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(Charity No: 1198883).

period ended 31 March 2024 set out on pages 16-20.

Responsibilities and basis of report

2011 Act and in carrying out my examination, I have followed all applicable Directions by the Charity Commission under section 145(5)(b) of the Act.

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

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

Signed:

Date:

Relevant professional qualification(s) or body

Address:

Simon Robinson SAS Accounting Services Ltd The Colchester Centre Hawkins Road Colchester CO2 8JX

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Appendix 1

Co Authored Publications 1st April 2023 31[st] March 2024

Joseph Chan, Diana M Flynnhttps://bmjpaedsopen.bmj.com/content/8/1/e002467, Morris Gordon, Raj Parmar, Kerryn Moolenschot, Lucy Jackman, Ed Gaynor, Jenny Epstein, Amanda Cordell, Hema Kannappan, Mark Furman, Julie Thompson, Marco Gasparetto, Marcus K H Auth

Swallowed topical steroid therapy for eosinophilic oesophagitis in children: practical, evidencebased guidance by the BSPGHAN Eosinophilic Oesophagitis Working Group BMJ Paediatrics Open 2024;8:e002467. doi: 10.1136/bmjpo-2023-002467

Cameron, Brenderia A. MS1,*; Jensen, Elizabeth T. MPH, PhD2; Dai, Xiangfeng PhD1; Anderson, Chelsea PhD, MPH1; Kodroff, Ellyn3; Strobel, Mary Jo4; Zicarelli, Amy5; Gray, Sarah6; Cordell, Amanda7; Hiremath, Girish MBBS, MPH8; Dellon, Evan S. MD, MPH1. S469

Frequent Report of Vitamin Deficiencies and Use of Supplements and Complementary/Alternative Treatment Approaches in Patients with Eosinophilic Gastrointestinal Diseases. The American Journal of Gastroenterology 118(10S):p S341-S342, October 2023. | DOI: 10.14309/01.ajg.0000951516.88383.f5

Venkatesh, Rajitha D. MD1; Hiremath, Girish MBBS, MPH2; Dai, Xiangfeng PhD3; Anderson, Chelsea PhD, MPH3; Kodroff, Ellyn4; Strobel, Mary Jo5; Zicarelli, Amy6; Gray, Sarah7; Cordell, Amanda8; Dellon, Evan S. MD, MPH3,*; Jensen, Elizabeth T. MPH, PhD9. S464

Telehealth Is an Acceptable and Feasible Option for Patients with Eosinophilic Gastrointestinal Diseases: Data From the Online EGID Partners Cohort. The American Journal of Gastroenterology 118(10S):p S339, October 2023. | DOI: 10.14309/01.ajg.0000951496.13588.06

Elizabeth T. Jensen, Xiangfeng Dai, Ellyn Kodroff, Mary Jo Strobel, Amy Zicarelli, Sarah Gray, Amanda Cordell, Chelsea Anderson, Girish Hiremath, Evan S. Dellon.

Early life exposures as risk factors for non-esophageal eosinophilic gastrointestinal diseases, Clinics and Research in Hepatology and Gastroenterology, Volume 47, Issue 7, 2023, 102170, ISSN 22107401,http://dx.doi.org/10.1016/j.clinre.2023.102170.

David J Jackson , Praveen Akuthota , Rebeca Andradas , Albert J Bredenoord , Amanda Cordell , Sarah Gray , Joyce Kullman , Sameer K. Mathur , Ian Pavord , Florence Roufosse , Christian Rubio, Irena Clisson Rusek, Dagmar Simon, Mary Jo Strobel & Tonya Winders

Plain Language Summary of principles for improving the care of people with eosinophil-associated diseases Received 22 Dec 2022, Accepted 06 Apr 2023, Published online: 17 May 2023 https://doi.org/10.2217/imt-2022-0312

Ryan Alexander, Karthik Ravi, Blake A. Kassmeyer, Ryan J. Lennon, David A. Katzka, Margaret H. Collins, Jeffrey A. Alexander

Sa1277 Extraintestinal symptoms of pain in eosinophilic gastrointestinal diseases AGA Abstract April 2023 DOI: 10.1016/S0016-5085(23)01810-3

©2024 EOS Network

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