## **Trustees’ Annual Report & Accounts Year ended 5[th] April 2025** 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 



## **Contents** 

**Welcome ..................................................................................................................................... 2** An Introduction From Our Honorary President & Founder ............................................................. 2 A Message From Our Chair of Trustees ............................................................................................ 3 **About Inflammatory Breast Cancer ............................................................................................... 4** Inflammatory Breast Cancer symptoms may include: ..................................................................... 4 **Our Strategy ................................................................................................................................ 5 About Us ..................................................................................................................................... 6** Our Purpose ...................................................................................................................................... 6 Our Values ........................................................................................................................................ 6 Our Behaviours ................................................................................................................................. 6 Our Story .......................................................................................................................................... 6 Public Benefit .................................................................................................................................... 7 Our Ribbon ....................................................................................................................................... 8 **2024/25 In Review ....................................................................................................................... 9 Our Partners .............................................................................................................................. 13** Advisors & Working Relationships ................................................................................................. 13 **Trustees and Volunteers ............................................................................................................ 14** Board of Trustees ........................................................................................................................... 15 Volunteers ...................................................................................................................................... 16 Charity Ambassadors ...................................................................................................................... 17 **Financial Review ........................................................................................................................ 18** Report Of The Trustees .................................................................................................................. 18 Independent Examiners Report ..................................................................................................... 21 Receipts and Payment Account For Year Ending 5 April 2025 ....................................................... 23 Statement of Assets and Liabilities ……………………………………………………………………………………………24 **Legal & Administrative Information ............................................................................................ 28** Charity Details ................................................................................................................................ 28 Governing Document Revised Constitution dated 16th June 2022 ............................................... 28 Social Media ................................................................................................................................... 28 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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## **Welcome** 

## **An Introduction From Our Honorary President & Founder** 


As founder and Honorary President of The IBC Network UK, alongside supporting patients through their diagnosis and treatment, my passion has always been to improve medical education around inflammatory breast cancer (IBC) and help ensure that healthcare professionals are equipped to recognise this rare and often overlooked form of breast cancer. 

## _**Thanks to our exceptional fundraisers and the generous support of our community, we secured presence at four influential medical gatherings over the past year.**_ 

- The **Association of Breast Surgeons (ABS, Bournemouth)** conference was a pivotal event for breast surgeons, oncologists, researchers and breast care nursing teams. 

- The **Royal College of General Practitioners (RCGP, Liverpool)** annual conference gathered over 1,400 primary care professionals, including registered GPs, medical students, and advanced clinical practitioners 

- The **Royal College of Midwives (RCM, Liverpool)** annual conference was well attended by registered midwives, maternity healthcare assistants, educators, trainers, student midwives and healthcare commissioners, many of whom were unaware of the subtle presentation of inflammatory breast cancer masquerading as mastitis-like symptoms. 

- The **IBC Symposium 2024 (Birmingham)** where we supported a focused clinical and academic event devoted entirely to inflammatory breast cancer, bringing together clinicians and researchers and patient advocates who are working to improve IBC diagnosis, treatment and care through shared expertise and patient centred partnership. 

Through these, and other, platforms, we've had the privilege of presenting and pushing for greater IBC symptom awareness, including medical imagery and sharing educational resources with **more than 5,000 healthcare professionals** spreading critical knowledge where it matters most. 

## _**“We are niche, but it is because of this we need representation.”**_ 

In parallel, our commitment to connecting within the patient community led to two meaningful inperson meet-ups: one in Birmingham with our dedicated IBC Clinic team and another in London at the incredible Future Dreams House in partnership with Future Dreams Charity, an opportunity brought about due to attendance at a previous medical conference. These gatherings are invaluable in fostering peer support, sharing information and building resilience together. 

## Caroline Ballinger 

## Caroline Ballinger Honorary President & Founder 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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## **A Message From Our Chair of Trustees** 


This year has marked an extraordinary period of growth, collaboration and visibility for the Inflammatory Breast Cancer Network UK. Our voluntary work has always been driven by a commitment to inform, support and empower those affected by inflammatory breast cancer (IBC), and over the past year we have seen that commitment reflected in the strength of our partnerships and the reach of our voice. 

## _**“We are proud to have deepened our relationships with national and international breast health organisations.”**_ 

A significant milestone this year was the inclusion of The IBC Network UK as a recommended support organisation in Breast Cancer Now’s updated IBC patient information leaflet. This ensures that more patients are signposted to tailored, expert-led support at the moment they need it most. 

Our collaboration with Future Dreams also continues to flourish and we are grateful to them for enabling a London and the Home Counties meet-up, ensuring our community is better connected to practical resources and emotional support. 

The most visible achievement of the year was the remarkable success of our first “Wear It Orange” campaign for IBC Awareness Day on 4th October. What began as a bold idea quickly grew into a vibrant, global moment of solidarity. The campaign was embraced by businesses, celebrities, international breast cancer charities and thousands of individuals who helped bring attention to the subtle symptoms and orange-peel like skin changes associated with this rare breast cancer. We saw an unprecedented 600% increase in social media engagement, alongside widespread community participation. This event is now firmly established in our annual calendar. 

## **#WearItOrange #IBCAwareness #OrangeInThePink** 

## _**“As the only UK charity dedicated specifically to inflammatory breast cancer, the demand for specialist, evidence-based support continues to grow.”**_ 

With this heightened visibility, however, has come a steady rise in the number of patients seeking our help. Meeting this need requires us to move forward with equal determination in our fundraising efforts and our long-established goals remain unchanged: to support UK-based IBC research that will drive earlier diagnosis, better treatments and improved outcomes for future generations; to support those with IBC; and to improve education in the medical community and public to raise awareness of IBC and its unique diagnosis and treatments needs. 

Thank you to our supporters, volunteers, partners and the entire IBC community. Your commitment is the backbone of this organisation. Together, we are building a stronger, louder and more hopeful future for everyone affected by this aggressive and often misunderstood form of breast cancer. 

## Naomi John 

Naomi John Chair of Trustees 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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## **About Inflammatory Breast Cancer** 

Inflammatory Breast Cancer (IBC) is a rare and aggressive form of breast cancer in which cancer cells block lymph vessels in the skin of the breast. It is not typically discovered by mammogram and often occurs prior to standard screening age recommendations for breast cancer. In the UK, IBC makes up only around 2% of all breast cancers. 

The breast may start off red/discoloured, swollen or tender and become progressively redder, more discoloured or even purple as the cancer progresses. IBC is not just in the skin; it is scattered throughout the lymphatic channels of the breast and can affect ducts, lobules and nodes. The invasive nature of IBC allows it to infiltrate the skin, producing the visual symptoms of IBC by blocking the lymphatics of the breast with cancer cells. Raising awareness about less-common symptoms of breast cancer is crucial for early detection and diagnosis of IBC. Although IBC has been recognised for over 200 years, many people still lack awareness of its symptoms which can lead to diagnostic and treatment delays. Our aim is to raise the profile of this orphan (rare) disease. By advocating to improve education and access to research funding, we can work towards improving outcomes for inflammatory breast cancer patients and their families. 

## **Inflammatory Breast Cancer symptoms may include:** 

- Breast swelling, in which one breast is larger than the other 

- Breast feels warm to the touch and may look infected 

- Shooting pain and/or itching 

- Dimpling of the breast that looks like orange peel (peau d’orange) 

- Inverted, flattened or discoloured nipple 

- Redness, discolouration and/or rash 

- Thickening of the skin or change in skin texture 

- Swelling in underarm or only on one side of neck 

- Lump may be present, although lumps are not common in IBC 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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## **Our Strategy** 


**All IBC Patients Have Timely Access to the Treatment and Support They Need to Live Well** 



❖ Patient Education 

_**Empower Individuals Through Information and Support**_ 

❖ Support Group Engagement 

❖ Partnerships with Other Charities 



_**Lead Awareness of IBC in the Public and Healthcare Professionals**_ 

❖ Focus on 1st Point of Contact in Medical Community 

❖ Stimulate Policy Initiatives 

❖ Advocate for UK Guidelines 



❖ Promote existing and continuing research 

_**Promote Research**_ 

❖ Understand the research landscape ❖ Build awareness of the Charity in wider research community 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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## **About Us** 

## **We are the only charity in the UK dedicated to supporting UK research into inflammatory breast cancer.** 

## **Our Purpose** 

The Inflammatory Breast Cancer Network UK exists to support those diagnosed with inflammatory breast cancer (IBC), to educate the public and health professionals about IBC and to promote IBC research in the United Kingdom. We are a scientific evidence and data-informed charity providing a support service for IBC patients and their family members. 

## **Our Values** 

- Take the time to understand what matters to our members 

- Always show respect 

- Develop services that our members need 

- Acknowledge the contributions our Trustees and Volunteers make 

- Communicate clearly 

## **Our Behaviours** 

- Treat people with dignity and respect 

- Protect the health, safety and well-being of ourselves and others 

- Responsibly manage the Charity’s resources 

- Take ownership of our work, behaviours and actions 

- Be proactive and prepared to take considered risks 

- Work as a team and share information for the benefit of our organisation and the services we deliver 

- Do not judge, blame, or make assumptions 

- Believe in continuous improvement, be receptive to change and learn from our mistakes 

- Be positive about our work, our colleagues and our organisational vision 

## **Our Story** 

The Inflammatory Breast Cancer Network UK was founded by Caroline Ballinger after her daughter was diagnosed with IBC in 2011. Realising there was no UK-specific support, information, or research, Caroline drew on resources from The IBC Network Foundation in the US and, in 2012, became a patient advocate. 

As a retired NHS nurse, Caroline was well placed to ensure IBC patients in the UK received up-todate, scientifically founded information and proper support. Tragically, within the first year, half of the patients she supported passed away, highlighting the urgent need for a dedicated charity. 

The organisation was established to fund IBC-specific research and raise awareness of the International Standard of Care for IBC. 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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At this time, Caroline was introduced to Dr Fedor Berditchevski of the University of Birmingham, whose early interest in IBC research sparked a long-standing collaboration. Our charity has proudly funded his work for several years and continues to do so. 

Reliable survival data for IBC in the UK is limited, as the disease is rare, often misdiagnosed and accounts for only 1–4% of breast cancer cases. IBC is aggressive and late diagnosis often leads to poorer outcomes than other breast cancers. 

Our charity remains committed to supporting patients and raising awareness within the medical community, continuing the vital work Caroline began in 2012. 

## **Public Benefit** 

## **Support** 

The Charity aims to provide a reduction in isolation and anxiety for patients who have received a diagnosis of inflammatory breast cancer by way of five private, well-moderated peer support groups, i.e. Living with IBC Support Group, created for Stage IV IBC members. We provide evidence-based data and information on IBC so that our members are knowledgeable about IBC treatment pathways, and we provide information so that our members can make informed choices about their care. Whilst other cancer charities provide some information on IBC, there is no other cancer charity in the UK specifically supporting patients diagnosed with IBC. 

The charity focuses on supporting women and their families when: 

- An IBC diagnosis has been confirmed 

- Members are undergoing trimodal treatment required for IBC, i.e. chemotherapy, surgery and radiotherapy 

- Treatment for IBC has been completed 

- Members who are living with a stage 4 IBC diagnosis 

- Members are considering or undergoing reconstruction following treatment for IBC 

- Loved ones who require support and advice 

Many women report feeling isolated, struggling to connect with others who fully understand what it is like to go through such a traumatic experience and the challenges of living with IBC. 

The Inflammatory Breast Cancer Network UK exists to fill this gap, providing support and raising awareness to ensure every patient receives appropriate care and treatment. 

The charity also supports individuals before diagnosis, helping them navigate the healthcare system and request the correct diagnostic imaging and tests to either confirm or rule out an IBC diagnosis. 

## **Education** 

Improving medical education on inflammatory breast cancer (IBC) remains a central focus of our charity. By raising awareness of the subtle and often overlooked signs of IBC, we aim to reduce delays in diagnosis and ensure that patients reach appropriate treatment pathways as early as possible. We deliver this by maintaining a physical presence at key primary and secondary healthcare conferences, where we engage directly with healthcare professionals, share lived 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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experience and provide visual resources depicting IBC on a range of skin types to help clinicians recognise skin-change patterns across diverse patient groups. In addition, we support breast care nurses and oncology teams through our collaboration with the IBC Clinic in Birmingham: strengthening clinical understanding and improving patient pathways. 

Earlier recognition is closely linked to better outcomes and these efforts contribute meaningfully to improving the quality of life and survival prospects for those affected by IBC. 

## **Research** 

Our charity is currently the only source of funding for IBC-specific research in the UK and our supporters help ensure that this rare disease continues to receive the attention it urgently needs. 

Increased understanding of the underlying causes and biological behaviour of this rare disease subtype may help unlock potential treatment pathways, using both new and existing therapeutic agents. 

Through our ongoing support of researchers, including collaborations with clinical teams such as the IBC Clinic in Birmingham, the charity ensures that research translates into tangible improvements in patient care. By funding research that would otherwise go unsupported, we make a meaningful contribution to reducing the impact of IBC on patients, their families and the wider healthcare system. 

## **Our Ribbon** 

## **Hope & Solidarity** 


**Orange - Reflecting the unique skin presentation of IBC: the peau d’orange.** 

**Pink - The recognised and established colour associated with breast cancer.** 

## **Black - A thin stripe to remember those we have lost to IBC.** 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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## **2024/25 In Review** 

Our main patient support group reached 425 members*[1] and hosted in-person meet ups in Birmingham, London and Edinburgh. 


Our team attended the annual conferences of the Royal College of GPs, Royal College of Midwives and Association of Breast Surgeons - bringing awareness of IBC to over 4000 healthcare delegates. 

Breast Cancer Now recognises us as a key charity providing specialist support for IBC. 


Our Charity committed to renew funding IBC-specific research at the University of Birmingham 


Caroline provided a direct briefing on inflammatory breast cancer to Wes Streeting, MP and Secretary of State for Health & Social Care! 

1 As at April 05 2025 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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## **Fundraising** 

**2024/2025 was as busy as ever!** 


**We ran our inaugural #WearItOrange campaign** 

This awareness initiative achieved a more than 600% increase in social media engagement, attracted attention from celebrities and national cancer charities, and led to numerous enquiries from patients concerned about possible IBC, demonstrating real-world reach and impact. 




We hit a significant charity milestone in October 2024, reaching over half a £million total fundraising, the majority of which has funded dedicated translational research at the University of Birmingham. This pioneering research is investigating the tumour-microenvironment, findings of which could more broadly influence cancer research beyond this specific patient cohort. 



The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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## **DAINS Cake Club - Charity of the Year** 

We were honoured to be chosen by Dains Accountants as their quarterly Cake Club “Charity of the Year” and were fortunate this opportunity coincided with the 10-year anniversary of Cake Club. 

Their enthusiasm, creativity and commitment to supporting patients affected by IBC was clear to see with every step of their efforts. 


The team tackled an extraordinary challenge walking 117 miles completing the Devon coastto-coast overnight and Solihull Half Marathon & 10k,  raising vital funds and bringing fresh visibility to this rare and aggressive form of breast cancer. 

We were also moved by the dedication of their support crew; the unsung heroes working quietly in the background to keep everyone safe, motivated and moving. Their contribution helped make these epic achievements possible. 








The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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This partnership also opened new doors. During Breast Cancer Awareness Month, we were invited to speak at an external Women’s Health event which proved to be a powerful reminder of why our work matters. One attendee later told us that, because of what she learned that day, she recognised urgent symptoms in a family member and was able to push for medical review. This led to a much earlier diagnosis and timely treatment intervention. 



Dains Cake Club has demonstrated the real-world impact of awareness, action and accessible information. Their support has helped us reach people we might never otherwise meet and we are grateful for the difference they have made. Thank you Cake Club and Dains Accountants! 


The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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## **Our Partners** 

## **Advisors & Working Relationships** 

We maintain close collaboration with clinical IBC specialists and relevant IBC organisations, while also fostering strong partnerships with other charities providing cancer services. These services are recommended to, and by, our support group members to ensure each patient receives the most comprehensive care. Collaboration includes cross-referrals between organisations, raising awareness of inflammatory breast cancer and working together to strengthen the support network for all impacted by IBC. 

## **THE IBC CLINIC** 

**PROFESSOR DAN REA PROFESSOR ABEER SHAABAN** Medical Oncology and Honorary Consultant in Specialist Breast Pathologist Medical Oncology University Hospitals, Birmingham University Hospitals, Birmingham **DR NAREN BASU DR FEDOR BERDITCHEVSKI** Leading Consultant of Oncoplastic Breast Surgeon Researcher University Hospitals, Birmingham University of Birmingham, Institute of Cancer & Genomic Sciences 

## **MS JACKIE DONNELLY** 

IBC Specialist Breast Care Nurse University Hospitals, Birmingham 

Since its establishment in 2022 under the leadership of Prof. Dan Rea, the IBC Clinic has made notable progress in improving the diagnosis and treatment of Inflammatory Breast Cancer (IBC) in the UK. Initially launched with limited funding, the clinic has developed into a crucial one-stop, multi-disciplinary team (MDT) service, operating in-person and remotely one morning per week. To date, the clinic has supported 72 patients, ranging in age from 30 - 72 years (mean age 51), with the majority presenting with Grade 3 disease. 

Imaging frequently showed diffuse changes rather than a distinct mass, a hallmark of IBC that often contributes to delays in diagnosis. The clinical team has successfully guided adjustments to chemotherapy and immunotherapy for 30 internal patients, increasing pathological complete response (Path CR) and improving patient outcomes. 

The clinic remains committed to improving survival rates, reducing diagnostic delays, and advancing IBC research, with the ultimate aim of establishing a national standard of care. 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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Key further initiatives for the IBC Clinic include: 

1. **Raising Awareness Among GPs:** In partnership with The Inflammatory Breast Cancer Network UK, ongoing efforts focus on educating general practitioners and primary care health professionals to recognise the distinct symptoms of IBC. 

2. **Future Planning:** 

   - Develop national IBC guidelines in collaboration with the Association of Breast Surgeons (ABS). 

   - Expand the IBC Clinic model regionally across the UK. 

   - Establish a comprehensive IBC patient registry. 

   - Initiate a fresh tissue collection pilot study (with ethics approval) and explore advanced imaging techniques, including thermography and contrast-enhanced mammography. 

3. **Addressing Health Disparities:** Recognising the delays are more common among ethnic minority patients, often due to variances in skin presentation (darker or purple tones rather than pink), underscores the importance of greater inclusivity and targeted awareness initiatives. 

## **ORGANISATIONS - IBC Outreach** 


**----- Start of picture text -----**<br>
EIBCC<br>European Inflammatory Breast Cancer Consortium<br>BREAST CANCER NOW<br>RADIADERM<br>**----- End of picture text -----**<br>




The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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## **Trustees and Volunteers** 

## **The Inflammatory Breast Cancer Network UK is an entirely volunteer run charity.** 

## **Board of Trustees** 

Our trustees who served during the financial year 2024-2025 and continue to serve are: 


**----- Start of picture text -----**<br>
Naomi John  Trustee since 12th May 2022<br>Chair of Trustees (Appointed Chair 29th January 2025)<br>Lucy Reynolds<br>Secretary  Trustee since  16th August 2023<br>Melanie Crooks<br>Trustee since 20th November 2024<br>Treasurer<br>Ashleigh Williams<br>Trustee since 21st June 2024<br>Fundraising Manager<br>Becky Wright<br>Trustee since 24th January 2024<br>Assistant Treasurer<br>Richard Amos<br>Trustee since 29th November 2017<br>Scientific Advisor<br>**----- End of picture text -----**<br>


We would also like to thank the other Trustees who served in this period for all they contributed to the Charity in their tenures: 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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Fiona (Autumn) Morris, Chairperson - Appointed 18th December 2021, retired 10th November 2024 Catherine (Cassy) Simpson, Treasurer - Appointed 18th December 2021, retired 31st August 2024 Diana Broughton, Fundraising Manager- Appointed 20[th] September 2023, retired 8 January 2025 

Post 5[th] April 2025, Georgia Papacleovoulou, Policy Manager was appointed a trustee. 

Our Trustees carry out their roles voluntarily and are appointed for 3-year terms following which they must be reappointed by a vote of the rest of the board.  At meetings of the Trustees, in case of a tie, the Chairperson has a deciding vote.  We periodically conduct a skills audit amongst our Trustees and volunteers to ensure appropriate skills and expertise in areas of importance to the Charity including governance, support services and medical research. 

## **Volunteers** 

Operating entirely through volunteer effort, our charity benefits from the unwavering commitment of individuals whose contributions enable us to deliver our mission and achieve measurable impact. 

In 2024, our volunteers contributed over 4,500 hours of their time, with a cost equivalent of more than £80,000 in value. 

||Caroline Ballinger<br>**Support Services Manager and**<br>**Honorary President**<br>(Founder & Previous Trustee)|“I have spent the last 10 years working alongside<br>medical experts in the UK and USA to gain knowledge<br>of IBC treatment protocols which enables me to give<br>our patient and family group members the most up-to-<br>date information in IBC care.”|
|---|---|---|
||Lorna Whyte<br>**Support Service Assistant**<br>Appointed 7th June 2023|“It is my pleasure to be able to give back to the charity<br>in any way I can and I’m quite honoured to take on this<br>role.”|
||Fiona Marshall<br>**Fundraising Assistant**|“Volunteering gives me the chance to engage<br>meaningfully with real-world needs in an area that<br>resonates deeply. I have had the pleasure of<br>connecting with others from different backgrounds<br>and walks of life who inspire me to try more and be<br>more.”|
||Sara Bonnell<br>**Assistant Administrator**<br>Appointed 19th March 2023|“I joined the charity because I wanted to give<br>something back to help others affected by this rare<br>and aggressive cancer which doesn’t get much<br>coverage from the charities that are household names<br>in the UK. I have been following the charity since it<br>started and I am honoured to be offered a post as a<br>volunteer.”|



The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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||||
|---|---|---|
||Liam Morris<br>**Website Manager**<br>Appointed 22nd April 2024|“In 2017, my mother was diagnosed with<br>Inflammatory Breast Cancer (IBC). This life-changing<br>event fueled my desire to give back to the community<br>and raise awareness about this rare and aggressive<br>disease.”|
||Rachael Honey<br>**Website Coordinator**<br>Appointed 23rd March 2023|“Like many people, I hadn't heard of Inflammatory<br>Breast Cancer until the diagnosis of a loved one…<br>When the opportunity to volunteer as a Website<br>Assistant came about I was delighted to be able to give<br>something back to such a brilliant cause.”|
||Jill Sturgeon<br>**Fundraising Support Assistant**|“The Inflammatory Breast Cancer Network UK is a<br>cause very close to my heart. Seeing firsthand how<br>underfunded IBC research is - especially with no<br>dedicated government or major charity funding -<br>motivated me to help.”|
||Shara Hand<br>**Social Media Assistant**|“I volunteer because I want to raise awareness about<br>IBC. As a British-Pakistani, I’m especially passionate<br>about spreading awareness of IBC in Muslim and<br>BAME communities, where diagnosis rates are often<br>lower.”|



_**We would like to thank all volunteers who served in this period for their contributions to the success of our Charity during their tenures.**_ 

## **Charity Ambassadors** 

||Heidi Loughlin<br>**Charity Ambassador**<br>Appointed 29thNovember 2017|Heidi was diagnosed with inflammatory breast<br>cancer (IBC) in 2015 and given just 12 months to live.<br>Heidi continues to be an inspiration to many with<br>her determination, resilience and compassion.|
|---|---|---|
||Giovanna Gerold<br>**Charity Ambassador**<br>Appointed 10th March 2025|“The IBC Network UK has been an incredible source<br>of information and support for me. I deeply<br>understand the importance of educating both<br>healthcare professionals and patients about IBC,<br>raising awareness for early diagnosis, and ensuring<br>that treatments adhere to Standards of Care for best<br>patient outcomes.”|



The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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## **Financial Review Period 6 April 2024 to 5 April 2025** 

## **Report Of The Trustees** 

The Trustees present their annual report and accounts of The Inflammatory Breast Cancer Network UK (“The Charity”) for the year ended 5[th] April 2025.  The accounts have been prepared in accordance with the Accounting Policies set out on Page 25 and comply with the Charity’s Constitution and applicable law. 

## **Constitution & Objects** 

The Charity was running as a non-profit organisation from 2014 to 2018.  In March 2018, a formal constitution was adopted, and the Charity was approved by the Charity Commission. 

The objects of The Charity are the relief of sickness and preservation of health in particular, but not exclusively, by: 

- (i) Supporting research in respect of inflammatory breast cancer to include, but not limited to, its causes, treatment, and prevention by making grants to academic or medical researchers or other research and disseminating the useful results for the public benefit, as the Trustees see fit. 

- (ii) Raising awareness and understanding of inflammatory breast cancer in the general public and with medical professionals for the public benefit. 

- (iii) Supporting those living with and recovering from inflammatory breast cancer through the provision of support, education and practical advice. 

The Trustees have paid due regard to the Charity Commission’s guidance on public benefit in deciding what activities The Charity should undertake.  The Charity has, as its prime aims, the raising of funds for research into inflammatory breast cancer and supporting individuals who have had a personal diagnosis of inflammatory breast cancer along with their families. 

## **Organisation** 

The Charity is run by a Board of Trustees.  Details of the Trustees can be found on Page 15. 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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## **Financial & Operating Review** 

The financial statements of the charity for the year under review and the financial position at the year end date are set out in the Accounts on pages 23 to 27. The Accounts are prepared on a receipts and payments basis as allowed for charities with an income below £250,000. 

Our 2024/2025 income of £77,918 has remained steady year on year (2024:£79,575) 

The majority of our income is donations based on the sterling efforts of our fundraising supporters – these supporters are individuals whose lives have been touched by inflammatory breast cancer whether personally or through a family member and friend. It is through their efforts that our income has increased year on year. A pictorial analysis of our funding is shown below: 


We were also grateful to receive a £2,400 unrestricted grant from Jog On Cancer Northern Ireland. 

The year 2024/25 has been a period of consolidation and saving in preparation for supporting a further multi period research programme at the University of Birmingham starting in 2025/2026. The University continued to utilise our grant awards made in prior periods to support its specialised research into inflammatory breast cancer. We did however continue to invest in our other charitable activities of awareness raising and member support, spending £14,016 in these areas. Our member support services, delivered by volunteers, continue to be important to us. Their contribution of knowledge and time on a voluntary basis financially benefits the charity in progressing our charitable objectives. 

Our net position for the year reflecting our planned saving for research preparatory work is £63,902 surplus compared to the small prior year deficit of (£101). 

Our funds in their entirety are unrestricted in nature. On 5 April 2025, our unrestricted cash funds stood at £95,910 (2024: £32,008). Looking into 2025/2026, we have created a research designated fund to earmark funds to fulfil our research commitments. 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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## **Reserves Policy** 

The charity has adopted a risk-based approach to its reserve policy. Free reserves are maintained for the following purposes: 

- To avoid bank borrowing if there is a temporary shortfall in income or a surge in expenditure. 

- To provide for emergencies. 

The Charity currently employs no staff and has no premises; its day-to-day operating requirements are low. During 2024/2025, the trustees undertook a review of the adequacy of the free reserve policy and in the light of operating model priorities this was amended to £6,000.  This updated policy as at 5 April 2025 is met. Reserves in excess of the policy are being held to further research activities in 2025/2026 onwards. 

## **Going Concern** 

The board has reviewed the charity’s activities and financial position together with factors likely to affect future development, including the impact of economic uncertainty on voluntary income, the impact of the cost-of-living crisis and a review of the costs associated with maintaining the charity.  It noted that whilst the charity remains reliant on income from fundraisers and donors, it has by virtue of its current operating model limited exposure to liabilities. As such, after making enquiries, the board is satisfied that the charity has adequate resources to continue to operate as a going concern for the foreseeable future and have prepared the accounts on that basis. 

## **Independent Examiner** 

The Charity has appointed Mark Gurney, Partner of Dains Audit Limited as Independent Examiner. 

## **Risk Management** 

In the financial period, the Charity adopted a new risk management framework.  While this new framework allows the Trustees to consider the risks applicable to the Charity in a different light, it does not reflect a change to the risk profile of the Charity. 

The main risk to the Charity remains the misappropriation of assets which is mitigated through dual control over the bank account and policies in connection with approvals and execution of any expenditures. Additionally, the financial position of the Charity is considered at a meeting of the Trustees at least quarterly. 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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## **Trustees’ Responsibilities in Relation to the Accounts** 

Law applicable to charities in England & Wales requires the Trustees to prepare accounts for each financial year which gives a true and fair view of the Charity’s financial activities during the year and of its financial position at the end of the year.  In preparing these accounts, the Trustees are required to: 

- Select suitable accounting policies and then apply them consistently 

- Observes the methods and principles of the Charities SORP 

- Make judgements and estimates that are reasonable and prudent 

- State whether applicable accounting standards and statements of recommended practice have been followed, subject to any material departures disclosed and explained in the accounts; and 

- Prepare the accounts on a going concern basis unless it is inappropriate to presume that the Charity will continue in business. 

The Trustees are responsible for keeping proper accounting records which disclose, with reasonable accuracy at any time, the financial position of the Charity.  This enables the Trustees to ascertain the financial position of the Charity and to ensure that the accounts comply with the Charities Legislation.  They are also responsible for safeguarding the assets of the Charity and hence, taking reasonable steps for the prevention and detection of fraud and other irregularities. 

Approved by the members of the Board of Trustees on 28 January 2026 and signed on their behalf by: 


## **Naomi John- Chair of Trustees** 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

21 



## **Independent Examiners Report to the Trustees of The Inflammatory Breast Cancer Network UK** 

I report on the accounts of The Inflammatory Breast Cancer Network UK (‘the Charity’) for the year ended 5[th] April 2025, which are set out on Pages 23 to 27. 

## **Respective Responsibilities of Trustees & Independent Examiner** 

As Trustees of the Charity, you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 2011. The Trustees consider that the Charity is eligible for exemption from audit per the criteria set out in section 144(1) of the Charities Act 2011 (‘the 2011 Act’) and is subject to an independent examination per the criteria set out in section 145(1) of the 2011 Act. 

I report in respect of my examination of the Charity's accounts carried out under section 145 of the 2011 Act. In carrying out my examination I have followed the Directions given by the Charity Commission under section 145(5)(b) of the 2011 Act. 

## **Independent Examiner’s Statement** 

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

- accounting records were not kept in accordance with section 130 of the 2011 Act; 

- the accounts do not accord with the accounting records; and 

- the accounts do not comply with the accounting requirements of section 133 of the 2011 Act. 

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. 

This report is made solely to the Charity's Trustees, as a body, in accordance with Part 4 (Regulation 31) of the Charities (Accounts and Reports) Regulations 2008. My work has been undertaken so that I might state to the Charity's Trustees those matters I am required to state to them in an Independent Examiner's Report and for no other purpose. To the fullest extent permitted by law, I do not accept or assume responsibility to anyone other than the Charity and the Charity's Trustees as a body, for my work or for this report. 


**Mark Gurney FCCA DChA** For and on behalf of Dains Audit Limited Birmingham 

Date: 28 January 2026 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

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## **Receipts and Payment Account For Year Ending 5 April 2025** 

|**Note**<br>**Receipts**<br>Donations<br>3<br>Grants<br>3<br>Other Fundraising<br>income<br>3<br>Investment Income<br>3<br>Other Income<br>3<br>**Total Receipts**<br>**Payments**<br>Activities to raise funds<br>4<br>Direct Charitable<br>Activities:<br>Grants paid for<br>Research<br>4<br>Awareness Raising<br>activities<br>4<br>Member Support<br>Activities<br>4<br>Administration and<br>Governance<br>4<br>**Total Payments**<br>**Net**<br>**Receipts/(Payments)**<br>**for the year**<br>**Transfers between**<br>**Funds**<br>Cash at Bank at start<br>of year<br>**Cash at Bank at end**<br>**of year**|**Unrestricted**<br>Unrestricted<br>**General**<br>General<br>**Fund**<br>Fund<br>**2025**<br>2024<br>£<br>£<br>**71,674**<br>73,340<br>**2,400**<br>2,000<br>**2,981**<br>3,940<br>**638**<br>295<br>**225**<br>-|
|---|---|
||**77,918**<br>79,575<br>**4,190**<br>935<br>**-**<br>67,774<br>**4,495**<br>8,296<br>**2,795**<br>333<br>**2,536**<br>1,456|
||**14,016**<br>78,794|
||**63,902**<br>781<br>**-**<br>-<br>**32,008**<br>31,227|
||**95,910**<br>32,008|



The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

23 



## **Statement of Assets & Liabilities as at 5 April 2025** 

|**Note**<br>**Cash Funds:**<br>Lloyds Current Account<br>Lloyds Deposit Account<br>Paypal Bank Account<br>**Other Monetary Assets:**<br>Gift Aid Recoverable<br>Just Giving Donation<br>Debtor<br>Prepayments<br>**Assets Retained for the**<br>**charity's own use:**<br>Furniture  and Equipment<br>**Liabilities:**<br>Accruals|**Unrestricted**<br>Unrestricted<br>**General**<br>General<br>**Fund**<br>Fund<br>**2025**<br>2024<br>£<br>£<br>**1,818**<br>288<br>**92,992**<br>31,720<br>**1,100**<br>-|
|---|---|
||**95,910**<br>32,008|
||**143**<br>-<br>**127**<br>-<br>**-**<br>688|
||**270**<br>688|
|||
||**-**<br>-|
||**-**<br>(11)|
||**-**<br>(11)|



The Notes 1-6 form part of these financial statements. The financial statements were approved by the Trustees on 28 January 2026 


## **Naomi John –  Chair of Trustees** 


## **Melanie Crooks - Trustee** 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

24 



## **Notes To The Accounts** 

## 1. **Basis of Accounting** 

The financial statements have been prepared in accordance with Section 133 of the Charities Act 2011 using the Receipts and Payments basis. 

The financial statements comprise the Receipts & Payments schedule, Statement of Assets & Liabilities and associated Notes. 

## 2. **Funds** 

## _**General Fund**_ 

The general fund is the Charity's unrestricted, undesignated fund available for any of the Charity's purposes without restriction. 

Designated Fund 

Designated funds are unrestricted in nature and created by the charity's Trustees for a specific purpose. 

Designated funds may be undesignated at any time by the charity's Trustees 

## 3. **Further Analysis of Receipts** 

|**Donations:**<br>Donations from<br>individuals<br>Donations from<br>organisations<br>Gift Aid Received<br>**Total Donations**<br>**Grants:**<br>Jog On Cancer<br>The Churchill<br>Foundation<br>**Total Grants income**<br>**Other Fundraising**<br>**Income:**<br>Lotto|**Unrestricted**<br>Unrestricted<br>**General**<br>General<br>**Fund**<br>Fund<br>**2025**<br>2024<br>£<br>£<br>**59,516**<br>61,374<br>**3,934**<br>3,101<br>**8,224**<br>8,865|
|---|---|
||**71,674**<br>73,340|
||**2,400**<br>-<br>-<br>2,000|
||**2,400**<br>2,000|
||2,463<br>2,975|



The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

25 



|Merchandise<br>518<br>965<br>**Total Other Fundraising**<br>**Income**<br>**2,981**<br>3,940<br>**Investment Income:**<br>Interest on deposit<br>account<br>638<br>295<br>**Total Investment**<br>**Income**<br>**638**<br>295<br>**Other Income:**<br>Member Meet<br>contributions<br>**225**<br>-<br>**Total Other Income**<br>**225**<br>-<br>4.<br>**Further Analysis of Payments**<br>**Unrestricted**<br>**Unrestricted**<br>**General**<br>**General**<br>**Fund**<br>**Fund**<br>**2024**<br>**2024**<br>**£**<br>**£**<br>**_Activities to raise funds:_**<br>Fundraising Regulator fee<br>50<br>50<br>Publicity & Fundraising<br>materials<br>2,576<br>885<br>Fundraising platform fees<br>1,564<br>-<br>**Total Activities to raise**<br>**funds**<br>**4,190**<br>**935**<br>**_Direct Charitable Activities:_**<br>**Grants paid for Research:**<br>University of Birmingham<br>grants<br>-<br>**67,774**<br>**Total Grants paid for**<br>**Research**<br>**-**<br>**67,774**<br>**Awareness Raising**<br>**activities:**<br>Conference attendance<br>2,644<br>3,845<br>Travel & Subsistence<br>associated with awareness<br>raising activities<br>639<br>2,894<br>Awareness raising materials<br>1,212<br>1,557|518<br>965|518<br>965|518<br>965|
|---|---|---|---|
||**2,981**<br>3,940|||
||638<br>295|||
||**638**<br>295|||
||**225**<br>-|||
||**225**<br>-|||
|||**4,190**|**935**|
|||-<br>**67,774**||
|||**-**<br>**67,774**||
|||2,644<br>3,845<br>639<br>2,894<br>1,212<br>1,557||



The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

26 



|**Total Awareness Raising**<br>**activities**<br>**Member Support Activities:**<br>Technology costs for Support<br>Work<br>Member Support materials<br>Member Meet Ups<br>**Total  Member Support**<br>**Activities**<br>**Administration and**<br>**Governance:**<br>Technology including<br>website<br>Insurance<br>Postage<br>Sundry<br>Governance|**4,495**<br>**8,296**|
|---|---|
||-<br>20<br>70<br>0<br>2,725<br>313|
||**2,795**<br>**333**|
||748<br>1,119<br>99<br>96<br>-<br>98<br>205<br>143<br>1,483|
||**2,536**<br>**1,456**|



## **5. Trustees and Related Party Transactions** 

During the year, no Trustee received remuneration as Trustee (2024:£nil). Trustees received out of pocket expenses, totalling £2,9,96 for 4 trustees (2024:£4,455 for 5 trustees). 

## **6. Grant Commitments** 

As at 5 April 2025, the Charity had committed to provide a project research grant totalling £92,801 over the next 2 years to the University of Birmingham. The grant is contingent on a suitable project researcher being in post. 

The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

27 



## **Legal & Administrative Information** 

## **Charity Details** 


**----- Start of picture text -----**<br>
Charity Name: The Inflammatory Breast Cancer Network UK<br>(also known as ‘The IBC Network UK’)<br>Registered Address: 11 Whitborn End, Malvern, Worcestershire, WR14 2XB<br>Email: info@ibcnetworkuk.org<br>Website: www.ibcnetworkuk.org<br>Legal Status Charitable Trust<br>Charitable Status: Registered charity in England & Wales (1177635) and Scotland (SC052303)<br>HMRC Charity No: EW89439<br>Independent  Mark Gurney, Partner, Dains Audit Limited, 2 Chamberlain Square,<br>Examiner:  BIRMINGHAM, B3 3AX<br>Bankers: Lloyds Bank Plc, Lewisham Branch, 120 Lewisham High Street,<br>LEWISHAM, SE13 6JG<br>**----- End of picture text -----**<br>


## **Governing Document** 

## **Revised Constitution dated 16[th] June 2022** 

## **Social Media** 



|**Facebook:**|**www.facebook.com/ibcnetworkuk**|
|---|---|
|**Instagram:**|**www.instagram.com/the_ibc_network_uk**|
|**LinkedIn:**|**www.linkedin.com/company/the-inflammatory-breast-cancer-network-uk**|
|**TikTok:**|**https://www.tiktok.com/@theibcnetworkuk.f**|
|**YouTube:**|**https://www.youtube.com/@theIBCnetworkuk**|
|**BlueSky:**|**@IBCNetworkUK.bsky.social**|
|**Twitter / X:**|**https://twitter.com/IBCNetworkUK**|



The Inflammatory Breast Cancer Network is a registered charity in England & Wales (1177635) and Scotland (SC052303) 

28