## Trustees’ Annual Report 1 April 2024 to 31 March 2025 EGFR POSITIVE UK Charity No. 1189722 ## Table of Contents |Table of Contents|Table of Contents|| |---|---|---| |Key Achievements||**03**| |1.|Our Mission, Vision & Values|**04**| |2.|Objectives and Activities|**05**| |3.|Achievements and Performance|**06**| |4.|Financial Review|**11**| |5.|Structure, Governance and Management|**12**| |6.|Reference and Administrative Details|**12**| |7.|Name of the Charity Trustees who Managed the Charity|**13**| |8.|Declarations|**13**| **02** ## Key Achievements ## **Community** Membership crossed 1,000+, strengthening our voice as the largest EGFR+ community in the UK. ## **Membership** Became a member of LuCE (Lung Cancer Europe) and participated in its Annual General Meeting in April 2025. ## **Campaigning** Successfully delivered the ‘All You Need is Lungs’ campaign in partnership with ALK+ UK and Ruth Strauss Foundation, raising awareness nationally. ## **Events** Expanded our Regional Ambassador programme to 15 Ambassadors, with a well-attended conference in Manchester. ## **Support** Continued core support services — online sessions, counselling, workshops — with consistently high participation and feedback. ## **Survey** Conducted an updated Member Survey to capture community needs and guide future strategy. The Charity was established on 29 May 2020. This is the Trustees’ Fifth Annual Report. EGFR positive non-small cell lung cancer (NSCLC) is a rare form of lung cancer caused by a genetic mutation which affects approximately 10-15% of those diagnosed with lung cancer. Patients are, on average, much younger than most other lung cancer patients and are often female and non-smokers. **03** ## 1. Our Mission, Vision & Values Our Mission and Vision were formally reviewed and updated in August 2025, ensuring that they continue to reflect the evolving priorities and aspirations of our community. The updated Vision reflects our renewed commitment to : A future where every person with EGFR+ lung cancer: - is diagnosed earlier and treated faster. - receives consistent, equitable care regardless of where they live in the UK. has the knowledge, confidence, and tools to advocate for themselves. feels connected, supported and seen as part of a strong, active community. benefits from a united lung cancer sector where charities work together to amplify impact. **This vision is guided by our Values of:** **Community Equality & Equity Trust** **Empowerment Collaboration** **04** ## 2. Objectives & Activities Since its inception in 2020, EGFR Positive UK has established itself as an important source of support and practical advice for patients living with EGFR positive lung cancer. It has also become a highly regarded ‘voice of the patient’ for clinicians, regulators and the pharmaceutical industry. We have created a support network in the UK for patients with Epidermal Growth Factor Receptor (EGFR) positive non-small cell lung cancer and their families. The advice and information we provide empowers and enables patients to have meaningful conversations with their healthcare professionals about their care and treatment. We advocate on behalf of EGFR positive lung cancer patients at a national level to ensure as many patients as possible receive a high level of care, wherever they live in the UK. The overall objective of the Charity is to enable patients and their families to live well with and beyond EGFR positive lung cancer. To achieve this, we: - have created a strong supportive community of EGFR+ patients and their loved ones. - support these patients, their families and caregivers by providing a secure platform where they can give and receive mutual support and exchange experiences about their treatment. - create opportunities for members to connect with each other through local, in-person and online events empower patients by providing information that enables them to demand a high level of care. - advocate on behalf of patients to ensure they receive the best care irrespective of where they live in the UK. - liaise and collaborate with relevant organisations such as other lung cancer charities and the - pharmaceutical industry, to work to raise awareness of EGFR positive lung cancer and campaign for early diagnosis amongst non-smokers. - undertake research to better understand the well-being needs of patients and their loved ones and provide practical accessible resources to meet these needs. raise funds for the above purposes. **05** ## 3. Achievements & Performance Two patients met in February 2019 with the aim of establishing a UK group of EGFR positive patients who could exchange experiences and give and receive mutual support. Later that year, as the activity of the group grew, they decided to form a Charity and it was registered by the Charity Commission on 29 May 2020. The initial aim of the charity was to support and inform patients, their families and carers through our peer support group. It became clear however, that there was a need and an opportunity to advocate for better, equally accessible and equitable care anywhere in the UK. This led to involvement with bodies such as NICE where the Charity now regularly represents patients affected by this rare form of lung cancer and takes part in the decision-making processes that approve new drugs and treatments. ## **A Year of Growth and Impact** In our fifth year we have continued the transition from a founder-led start-up, to a fully-fledged sustainable not-for-profit organisation capable of serving the needs of patients and their families living in the UK with EGFR Positive lung cancer. The priority has been to create an organisation whose internal infrastructure makes the Charity both sustainable and scalable. The initiative taken last year has continued to establish collaborative working practices backed by shared technology systems ensuring that we have a spread of involvement beyond the Trustees. Our activities, performance and growth in our fifth year has exceeded our expectations. Going forward our emphasis will continue to be to support the well-being of EGFR+ patients and their families. **06** ## Achievements and Performance Cont. We will do this by: - expanding our membership through the implementation of our digital influencing strategy. - offering individual counselling and workshops. - advocating for the best care possible by continuing our involvement with key decision makers in regulatory authorities, pharmaceutical companies and clinicians. in collaboration with other onco-gene driven cancer charities, research the patient experience thereby adding to the body of knowledge that will drive progress and change for patients and their families. - roll out our nationwide initiatives that will enable members to meet locally with fellow EGFR+ patients and their caregivers ,e.g. run 4 regional conferences that will enable members to connect with each other, learn more about how to live well with EGFR+ lung cancer and understand developments in the treatment of this disease. ## **Evidence based practice at our core** We carry out a survey of our members each year to gather vital real-world data on the experiences of people living with EGFR-positive lung cancer. This survey helps us understand the full picture of diagnosis, treatment and care, while identifying gaps in support, highlighting regional disparities, and uncovering the impact of the disease on patients’ daily lives. These insights help us to shape the support that we give to those affected by the disease, and directly informs our advocacy work—strengthening our voice in discussions with healthcare professionals, pharmaceutical companies, and during NICE treatment appraisals. The results from our surveys will be shared at key academic conferences (such as the British Thoracic Oncology Group and Lung Cancer Nurse UK conferences), as we remain committed to sharing our findings through academic channels and continuing to influence care and policy for the benefit of the EGFR community. **07** ## 3.1 Support of Patients ## **Website** The website continues to be an essential resource, offering information about the charity and the disease. It helps patients and carers become better informed about EGFR-positive lung cancer and encourages them to join the Peer Support group on Facebook for additional support. ## **Members’ Forum** We held a successful in-person event for members in Manchester in 2024. These focus groups helped us better understand support needs and experiences. ## **Peer Support Group** Our Facebook group remains core to our support services. Membership has grown from 707 to nearly 1,000 by March 2025. Daily posts from patients share experiences and offer emotional support. New members are warmly welcomed. A member survey showed that 98% would recommend the group to other EGFR-positive patients. Further online support is provided via the monthly ‘Meet and Chat’ forums which is held via Zoom. The charity supports Regional Ambassadors who host face-to-face meetings in fifteen different regions of the UK. These meetings are held every two months in each region. ## **Online Activities** ‘Ask the Expert’ Zoom sessions continued with eight presentations from EGFR Clinical and holistic health experts. Recordings are available on our website. Monthly Zoom coffee mornings and evening drop-ins provided important peer interaction. We also facilitated individual coaching and group sessions to support mental resilience. These six-week programmes focused on understanding the emotional impact of cancer and fostering self-management strategies. **08** ## 3.2 Advocacy EGFR Positive UK continues to act as a trusted patient voice in national regulatory processes. We engage with NICE, SMC, NHS, and pharmaceutical companies to ensure that EGFR-positive patients are represented in treatment and care decisions. During 2024–25, we collaborated in campaigns such as ‘All You Need is Lungs’ with ALK+ UK and The Ruth Strauss Foundation. This campaign addressed the misconception that only smokers get lung cancer and promoted early diagnosis among younger, fit non-smokers. We are members of the United Kingdom Lung Cancer Coalition (UKLCC) and sit on the Clinical Excellence Group (CEG) for Lung Cancer alongside eminent Clinicians.We also became a member of Lung Cancer Europe (LuCE) and participated in their AGM in April 2025. Our Regional Ambassadors distributed information materials in clinics and helped connect with local patients. We also grew our presence on social media platforms—X, LinkedIn, Instagram, and Facebook—to expand our digital advocacy. We represented patients in five NICE drug appraisal hearings and one SMC appraisal, providing detailed patient experience submissions. We have contributed to and consulted on multiple clinical trial protocols and research grant applications, strengthening our role in Patient and Public Involvement and Engagement. We amplified the patient voice with MPs and representatives of the House of Lords, and have taken part in key national campaigns, including #CatchUpWithCancer at the Houses of Parliament on World Cancer Day 2025. **09** ## 3.3 Fundraising ## £86,653 In 2024–25, EGFR Positive UK’s total donations was £ 67,484 – 88% came from fundraising and an additional £ 19,169 from Gift Aid, enhancing the impact of such donations. 24 individuals and families raised funds, many in memory of loved ones. These were raised primarily through the fundraising platforms Just Giving and Much Loved. The most notable was the Wysocki family, who raised over £20,000 in memory of Alex Wysocki, who sadly passed away at age 24. These funds are earmarked for the production of a short film about youth lung cancer, expected to be ready by Autumn 2025. More activities are planned in the FY 2025-26 to fundraise for supporting this project. The charity is deeply grateful to the Wysocki family and all supporters, as well as all the other fundraisers. Going forward, our emphasis will continue to be to support the well-being of EGFR+ patients and their families. We will do this by expanding our membership through more focused Digital Influencing, offering individual and group counselling and workshops, advocating for the best care possible by continuing our involvement with key decision makers in regulatory authorities, Pharmaceutical companies and Clinicians, in collaboration with other onco-gene driven cancer charities, research the patient experience thereby adding to the body of knowledge that will drive progress and change for patients and their families. **10** ## 4. Financial Review The Charity currently receives donations through members’ contribution, fund raising through crowd funding platforms and grants from pharmaceutical and other companies /trusts. The Charity prepares its accounts on a receipts and payments basis. Total receipts during FY 2024–25 were £88,938 – 51.7% over last year, primarily through fundraising by our members and gift aid thereon. We do not have premises and we do not employ staff; hence, DBS checks are not applicable. Trustee costs primarily relate to reimbursement of travel and subsistence for attending conferences/workshops and meetings. The funds are mainly available to promote the charity’s objectives in advocacy and outreach through in-person members’ events and activities. We have a low level of fixed costs e.g. website maintenance, subscriptions to other organisations, insurance etc. Restricted funds of £18,212 were set aside for the film project funded by the Wysocki family. A general surplus of £13,712 was added to Reserves. The Charity invested £70,108 in fixed deposits and held £24,502 in its bank at the year-end. **11** ## 5. Structure, Governance & Management The Charity is a Charitable Incorporated Organisation, and the governing document is its Constitution. The Constitution provides that there shall be between three and eight Trustees. The Trustees have had regard to the guidance issued by the Charity Commission on public benefit. ## 6. Reference and Administrative Details Charity Name : EGFR Positive UK Other name the charity uses: EGFR+ UK Registered charity number: 1189722 Charity’s Principal Address: 2 Bateman Grove, Ash, Surrey, GU12 6QG **12** ## 7. Name of the Charity Trustees who Managed the Charity |**Trustee Name**|**Office (if any)**|**Dates Acted if not for**
**whole Year**|**Name of person or body**
**entitled to appoint**
**trustee (if any)**| |---|---|---|---| |Angela Ada Mary Terry|Chair|Trustee From 15 Aug
2020. Chair from 12 Jan
2022|| |Soumitra Bose|Treasurer|From 20 May 2023|| |Virginia Mary Harrison|Research|From 20 May 2023|| |Natasha June Loveridge|Marketing|From 10 Aug 2023 to 3ist
March 2025|| |Elizabeth Lucy Baker|Member Support|From 1 Dec 2024|| |Charlotte Judyth Maxwell|Events|From 9 Sept 2024|| Corporate Trustees – n/a Names of Trustees holding title to property belonging to the Charity – n/a Funds held as custodian trustees on behalf of others – nil ## 8. Declarations The Trustees declare that they have approved the Trustees’ Report as above. Signed on behalf of the Charity’s Trustees: ||**Signatures**|Soumitra Bose|Angela Terry| |---|---|---|---| ||**Full Names**|Soumitra Bose|Angela Terry| ||**Positions**|Treasurer|Chair| ||**Date**|Oct 13, 2025|Oct 13, 2025| **13** CHARITY COMMISSION FOR ENGLAND AND WALES Independent examinerfs report on the accounts Section A Independent Examiner's Report Report to the trusteesl members of EGFR Posttive UK On accounts for the year ended 31 March 2025 Charity no (if any) Set out on pages 3-5 I report to the trustees on my examination of the accounts of the above charity ('the Trust.) for the year ended 3110312025. Responsibllltles and As th8 charty trustees of the Trust, you are responsible for the preparation basis of report of the accounts in accordance with the requirements of the Charities Act 2011 (llhe Acr). I report in respect of my examination of the Trust's accounts carried out under section 145 of the 2011 Act and in carying out my examination, I have followed the applicable Directions given by the Charity Commission under section 14515llb) of the Act. I have completed my examination. I confim that no material matters have come to my attention in connection with the examination which giv8s m8 cause to believe that in, any material respect.. accounting records were not kept in accordance with Section 130 of the Act or the accounts do not accord with the accounting records Independent oxamlner's statement I have no concems and have come across no other matters in connection with the examination to which attention should be drawn in order to enable proper understan g of the accounts to be reached. Please delete words in the brackets if they do not 8ppIy. Signed: Date: 1311012025 Name: Neil Horan Relevant professional qualification{s) or body (If any): ICAEW- Chartered Accountant Address: 8 St Ronan's Close, Harrogate, North Yorkshire, HG2 8LF Section B Disclosure Only complete rf the examiner needs to highlight matters of concem (see CC32, Independent examination of charity accounts.. directions and guidan￿ for examiners). IER October 2018 Give here brief details of any items that the examiner wishes to disclose. IER October 2018 GFR POSITIVE UK FINANCtALSTATEIIEITS R£C£IPTS& PAYMENTS FOR7HEYEARENDED31 MARCH 2025 IN£ VearEDdl 31siMarch zozs 31st Ilarch 2024 Rositlcted FuDds Uwestr5tted Totsi Fund RECEIITS D(bllagiOn5 & F￿nd Ra25 16.664 4.42B 50fiZO 67.484 19.169 1.157 i.tz8 5B254 58.254 & ￿¢r rece Intcrt5ffJn De 05 J62 167 I.IZ8 TOTAL RECEIPTS 2).092 67046 88.938 50.616 511.616 PAYMENT5 C•stol Acisfylttes 7MSB IZJJ97 600 19J)40 6AbOO 1285 2J147 7ffj50 I3￿97 600 19.040 6.600 1.265 2Jl47 19.3S3 7.139 l.Jf85 14.663 3.576 1.5Jil 2.2JY 75 19.3$3 PJtlL'Dts' Uutreadt 1.585 14.663 3.576 1.53U 2,284 75 iial c￿￿nIU￿￿￿[Io￿S Trav*1￿￿& Rtwnburscmtnr5 PubllLIty hlaicnlls Costs Film pr￿uL￿n P*st4 e & Statiun¢ 2,8¥0 2%80 350 350 73 LDn5ultantv fet5 2.177 1252 loo 36 Z.177 1252 loo 36 CL)r tlun T UaokChJr B8 B8 Tra￿lff w FIX 10.000 ZOnOCb 30ATrOO 4D.000 do.ooo TOTAL PAYf4ENTS 12MUO 74242 8?.IZ2 90.722 ¥0.722 PAVIIEKr AECEIM 82JZ 6J96 IBI6 32.106 32.IOG (ASM FUIIDSAT 31 MARCH ZOZ4 2Zh86 i4.7Y2 54.792 CASH FUNDS AT 31 YARCII Z025 8212 16290 2d50Z Z2.6B6 22,686 IER October 2018 FINAFICIALSTATENWITS ATUIEKf OFA55ETSA140LIABtLmES FOR TMI YEAB Et4DED31 MARCH Z024 IN£ ¢Trdl 31JtMar¢h ZDZ4 vexe￿ X15tMarch zozs Restricted d5 Totsl CASH FVIID5 Z4501 60.108 24502 70.IQ8 22.6¥6 40.00 22.686 40000 Fued De ds lo￿ TOTAL ASSttS IOAW I Bl.610 94.010 61086 62.6B6 ACCUMULrtTEDFUNDS lu% br hi lorwjrd lus TrorydsitsrthL Yrjr NNeL Surplu% F￿nd￿l)rr￿4 l¢•thrd 62.686 94.742 182L2 94.610 1 62.686 62h86 I 5URPLU5 FUNDS Y¢•r 31siMvrb 202S Year kndl $14tMar£h Total Recei Ai