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2024-03-31-accounts

Trustees’ Annual Report & Accounts Year ended 5[th] April 2024

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

Contents

Welcome 1
An Introduction From Our Honorary President & Founder 2
A Message From Our Vice Chair/Interim Chair of Trustees 2
About Inflammatory Breast Cancer 4
About Us 5
Our Purpose 5
Our Story 5
Our Vision 6
Our Mission 6
Our Values 6
Our Behaviours 6
Public Benefit 6
Our Ribbon 7
Our Strategic Plan 8
Improved Quality Care & Support 8
Knowledge & Understanding 9
Peer Support & Community Involvement 10
Making The Charity Stronger 11
Supporting Research 12
Our Impact 13
Our Funding 15
Supporter Impact 15
Our Partners 17
Advisors & Working Relationships 17
Trustees & Volunteers 19
Board of Trustees 19
Volunteers 20
Charity Ambassadors 21
Financial Review 22
Report Of The Trustees 22
Independent Examiners Report 26
Receipts and Payment Account For Year Ending 5 April 2024 26
Legal & Administrative Information 32
Charity Details 32
Governing Document 32
Social Media 32
Thank you! 33

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

1

Welcome

An Introduction From Our Honorary President & Founder

As we come to the end of our eighth year, we reflect on the patients and their families/carers we have supported, the types of support we have offered and how we might develop our services to keep up with an ever-changing world and the changing needs of our members.

The Inflammatory Breast Cancer Network UK has continued to work towards its vision “until we reach the day that we can keep every patient alive, we must find ways to help everybody living with inflammatory breast cancer and support them to live well”.

As a charity, we continue to deliver professional and timely support to our members, either virtually, privately or in-person across the UK. Feedback from our members continues to be very positive and highlights the importance of raising awareness among all health professionals so they are better placed to recognise the symptoms of inflammatory breast cancer and help achieve a more accurate and earlier diagnosis.

We have begun 2024-25 in a robust position and I feel confident in the Charity’s continued ability to deliver on its strategic priorities . The nature of our work in providing virtual support services and the fact that we are only staffed by volunteers along with close control on other costs means that the charity’s expenditure remained consistent throughout the last financial year and while we expect an increase in costs in this financial year, all of this will be in service of our purpose as we find new ways to support those living with Inflammatory breast Cancer and raise awareness of IBC throughout the medical community. As in previous years, the vast majority of the Charity’s funds have been spent in line with our objectives and this will continue as we continue to provide the various elements of support available for patients, their families and our researchers.

Moving forward, I believe our members will need our support more now than ever before as the fallout from the current economic situation will impact on their mental health as much as cancer is impacting on their physical health.

I want to take this opportunity to say thank you to everyone who is part of The Inflammatory Breast Cancer Network UK.

Caroline Ballinger

Caroline Ballinger Honorary President & Founder

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

2

A Message From Our Vice Chair/Interim Chair of Trustees

The past year has been a pivotal one for The Inflammatory Breast Cancer Network UK. Despite the ongoing challenges of the cost-of-living crisis, we have made significant strides in advancing our mission, thanks to the unwavering dedication of our volunteers, supporters and trustees.

One of our key achievements this year has been broadening the reach of the charity with regard to medical education and healthcare professional engagement.

By attending UK, European and international medical conferences, we have been able to spotlight inflammatory breast cancer, raising awareness among healthcare professionals and building invaluable connections within the medical community. Our charity had the honour of participating in the San Antonio Breast Cancer Symposium as one of three patient advocate panelists in the session entitled “ Inflammatory Breast Cancer: Clinical Challenges, Evolving Concepts and Novel Treatments (People’s Choice) ” and got the chance to highlight the role of patient advocates and the work we do in providing support to patients and their families, along with giving timely, specific information to help them better navigate diagnosis, prognosis and treatment requirements for this rare cancer.

The IBC Network UK not only champions patients, enabling them to make informed treatment choices, but also raises awareness and promotes research funding and education. These efforts highlight disparities in care and pave the way for a greater understanding and recognition of this rare and aggressive disease, empowering healthcare professionals to confidently facilitate earlier diagnosis and initiate appropriate, timely treatments.

Our fundraising efforts this year have been nothing short of exceptional; from community events to the success of online campaigns, the generosity of our supporters has been truly inspiring. As a volunteer-led organisation with minimal administrative costs, every pound raised directly contributes to supporting patients, educating the public and healthcare professionals about inflammatory breast cancer, along with funding groundbreaking research into inflammatory breast cancer at the University of Birmingham and beyond.

Looking ahead, we remain committed to expanding our impact and maintaining the pace we have set with our social media channels, ensuring we are consistently posting and engaging with audiences across multiple platforms. We are actively working to increase our volunteer base and strengthen collaborations with partner organisations. Our efforts to ensure that patients, families and caregivers feel supported and empowered remain at the heart of everything we do.

To everyone who has contributed this year - whether by volunteering, donating or spreading awareness - we extend our deepest gratitude. Together, we are making meaningful progress in advancing research and knowledge of inflammatory breast cancer.

With heartfelt thanks,

Naomi John

Naomi John Vice Chair/Interim Chair of Trustees

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

3

About Inflammatory Breast Cancer

Inflammatory Breast Cancer (IBC) is a rare and very 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, it 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 IBC is crucial for early detection and diagnosis. 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 disease. By advocating for education and research funding, we can work towards improving outcomes for this aggressive form of breast cancer.

Inflammatory Breast Cancer symptoms may include:

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

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About Us

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 and fund 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 Story

The Inflammatory Breast Cancer Network UK was founded by Caroline Ballinger. Caroline's daughter was diagnosed with IBC in 2011 and it quickly became clear to Caroline that there was no existing IBC-specific support, information or research in the UK.

Fortunately, Caroline discovered The IBC Network Foundation in the United States who kindly offered some support services to those in the UK. In 2012, after seeing her daughter through treatment, Caroline was asked by support group members to become a patient advocate.

As a retired NHS nurse this role was a good fit and Caroline began the journey of ensuring that IBC patients in the UK receive proper support and access to the most appropriate, up-to-date and scientifically founded information on IBC and its treatment.

Very sadly, just in the first year, half of the patients Caroline supported passed away. The remaining support group members felt that it was time to set up a UK charity dedicated to IBC. The charity’s initial aims were to fund IBC-specific research and to ensure that patients and clinicians are made aware of the International Standard of Care for IBC. Caroline was asked to help make this happen.

It was at this same point that luck was on our side. Caroline was introduced to Dr Fedor Berditchevski from the University of Birmingham, Institute of Cancer and Genomic Sciences, by Terry Arnold of The IBC Network Foundation (US) who had met him by chance at a conference. Dr Berditchevski had an interest in IBC research and the rest, as we say, is history. Our charity has funded Dr Berditchevski’s research over several years in the hope that one day we can find a cure for this cruel disease.

Survival outcome data exclusively for inflammatory breast cancer (IBC) in the UK is limited as the condition is rare, accounting for 1-4% of all cases in the UK, and often grouped under broader breast cancer statistics. However, it is known that IBC typically has a poorer prognosis than other types of breast cancer due to its aggressive nature and the tendency for late-stage diagnosis. For this reason, the Charity will always support those diagnosed with IBC and continue its work in raising awareness in the medical community about this rare form of breast cancer and the best methods of treatment, just as Caroline had started back in 2012.

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

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

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Our Vision

Until we reach the day that we can keep every patient alive, we must find ways to help everybody living with inflammatory breast cancer and support them to live well.

Our Mission

Our Values

Our Behaviours

Public Benefit

As IBC is a rare and very aggressive type of breast cancer, anyone diagnosed with IBC can find themselves feeling very scared, isolated and alone. Many women have said that they struggle to find other IBC patients and find themselves with nowhere to turn, unable to speak to anyone who truly understands what it is like to go through such a traumatic experience. The Inflammatory Breast Cancer Network UK is there to fill this gap.

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 private 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 and the preservation of their mental and physical health.

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

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Whilst other cancer charities provide some information on IBC, there is no other cancer charity in the UK who specifically supports women diagnosed with IBC.

The charity focuses on supporting women and their families when:

Our Ribbon

The ribbon is one of hope and solidarity.

The colours of the IBC ribbon have been carefully chosen and there is a very profound reason why pink, orange and black are featured.

Orange - Reflecting the unique skin presentation of IBC: the peau d’orange (orange peel appearance).

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

Black - A thin stripe to remember those we have lost as IBC is such an aggressive form of cancer.

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

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Our Strategic Plan

Our 2023-2027 Strategic Plan is available on our website and sets out our plans to ensure we continue to strive towards our mission and vision.

Here are some highlights from the last financial year and plans for how we will move forward:

Improved Quality Care & Support

The quality of care and support available throughout the UK is inconsistent. We will do all we can to ensure those affected by inflammatory breast cancer can access the care and support they need.

Supporting over 500 members from diagnosis, through treatment and beyond.

2023/24

For the period 2023-24, the charity saw approximately 100 new patient members join our support group. Compared to the previous year, this figure has doubled, and we forecast this trend will continue as we work on increasing awareness of IBC.

Despite the high increase in new patient members, the charity continues to run its four support group:

The IBC Network UK - Support Group (for all our patient members) The IBC Network UK - Family Group (for carer/family members only) The IBC Network UK - Living with IBC (for our Stage IV patient members only); and The IBC Network UK - IBC Reconstruction (for members considering or planning reconstruction).

Future Plans

  1. Increase our support service team to ensure we have no key person risk or succession planning issues with our current support service volunteers.

  2. Collaborate with other organisations who offer services that we do not, strengthening the work of both organisations.

  3. Increasing awareness of our work in the cancer charity and care sectors and inviting collaboration wherever possible.

  4. Develop a bespoke package of support and communication specifically for family members and carers. This support will be provided by our support service team, ensuring continuity of information and language whilst professional and confidential boundaries are maintained.

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

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Knowledge & Understanding

Inflammatory breast cancer is a rare form of breast cancer meaning many health professionals are unaware of the impact of the disease, its symptoms and how best to treat it

Engaging the medical community and creating working partnerships with professional bodies to ensure The IBC Network UK is better represented.

2023-24

A successful year for raising awareness about IBC with the public and within the healthcare sector.

The charity has focused on increasing overall awareness about the role the charity can play after a diagnosis and the support it can offer to patients at each stage of their tri-modal treatment and beyond.

The charity has attended many conferences and symposia, networking with oncologists, breast surgeons, radiologists and breast care nurses to increase the awareness of IBC. This has led to us being invited to hold charity stands at these symposia where we are hopeful to get IBC onto symposia agenda in the near future.

We continue to build links and work in partnership with organisations to ensure those affected by IBC have better access to standards of care, support and information.

Future Plans:

  1. Develop and promote an inclusive service, in both the language we use and the practical elements of our service, to best represent all users and future users of The Inflammatory breast Cancer Network UK.

  2. Ensure our support is visible and accessible to anyone who is eligible, at the point of their diagnosis, by working with relevant organisations to improve awareness.

  3. We aim to increase the reach of our training and education programme for healthcare professionals by year end 2025. A key part of this will be to expand the different professionals reached, with particular focus on GPs and breast care nurses.

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

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Peer Support & Community Involvement

The inflammatory breast cancer community knows the difficult nature and challenges of being diagnosed and living with this disease. They are best placed to support others facing similar situations. Likewise, their experiences and knowledge are invaluable in helping us to develop resources and information for others.

Promoting inclusion and embedding peer support to destigmatise mental health by providing a community where people feel accepted and understood.

2023/24

We have continued to focus on encouraging those who know the difficulties and the challenges of being diagnosed and living with a rare disease, enabling them to support others facing similar situations. Our online support groups are not just sources of information but allow for peer support and we are continually assessing further opportunities for community involvement which is also a great source of funding for us.

Our Fundraising team has designed a wide selection of materials for our supporters to utilise in their fundraising activities. The charity continues to work on the language we use to ensure inclusivity and continuity of communication, and this follows through in our social media platforms, website and media releases.

Future Plans:

  1. Build strong relationships with other cancer related organisations and work together to better support patients, families and carers.

  2. Represent the needs of our patient groups at policy level across the UK to ensure the challenges they face are understood within the cancer sector and are adequately resourced.

  3. Newsletter - we are reintroducing our newsletter to keep members, fundraisers and other followers up to date with the Charity.

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

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Making The Charity Stronger

As a charity with a small team, we need to ensure that we have the appropriate resources, strategies and processes in place to work as efficiently and effectively as we can to best support members affected by inflammatory breast cancer and the professionals involved in their care.

Ensuring robust governance, fundraising, communications and social media strategies.

2023/24

The Charity spent time in the last year reviewing and updating its governance practices including introducing a new risk management framework.

Future Plans

  1. Create a Patient User Group Representative role to interact with the Board of Trustees and assist in ensuring changing patient and family members’ requirements are met.

  2. Embed a risk management framework

  3. We continue to build new relationships with donors and develop existing relationships so we maintain a diverse range of income streams to ensure long-term sustainability.

  4. In addition to the support group volunteers we are seeking additional volunteers to help in a number of areas such as lobbying, marketing, website content and social media.

  5. All teams operating within the Charity are ensuring their processes are documented and robust so that they can outlast any one person operating them - we are only custodians of the Charity.

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

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Supporting Research

As a key organisation supporting members affected by inflammatory breast cancer in the UK, we are best placed to provide up to date, reliable and understandable guidance about this disease.

Providing grant awards for vital UK research into inflammatory breast cancer.

2023/24

As the only source of UK funding for inflammatory breast cancer research in the UK, providing grant awards to researchers at the University of Birmingham, Institute for Cancer and Genomic Sciences, remains one of our primary missions.

Future Plans

We continue to work with the team at Birmingham University to look for ways to fund their research - ideally on a longer term and more sustainable basis. In line with our 4th goal of making the Charity sustainable we are currently looking at opportunities to:

  1. Fund research over longer time frames for example a 3 year PhD student

  2. Partner with other charities funding research in Breast Cancer to ensure that they consider the causes, needs and treatment of IBC in that research.

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

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Our Impact

MEMBERS & FAMILIES

We provide bespoke, personal support to over 500 service users: 434 Stage III members

100 Stage IV members, Living With IBC 104 Family/Carer members 50 Breast reconstruction members

SUPPORT SERVICE TEAM Our Support Service Team participates in over 3000 conversations with patients, support group users and family members per annum; communicating via phone, email, direct messages and moderating the 6 social media support groups managed by the charity. A substantial portion of the charity's resources, though not captured within our impact statistics, is dedicated to voluntarily supporting patients who suspect they may have inflammatory breast cancer and guiding them towards appropriate resources and support services.

PEER SUPPORT FUND

Our Peer Support Fund provides discreet financial assistance to lower-income support group members, enabling them to attend official IBC meetups in their region. These meetups offer a valuable opportunity to connect with other IBC members, helping to combat feelings of loneliness and isolation.

GRANT AWARDS To date, over £344,000 has been dedicated to our UK-based IBC research programme at Birmingham University, with a further £12,000 dedicated to collaborative IBC research between the Universities of Birmingham and Antwerp.

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

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CONFERENCING

By representing the Inflammatory Breast Cancer Network UK at relevant UK, European and US conferences, we have been able to raise awareness of IBC and bring this orphan disease back into the spotlight. We are hopeful that our attendance at these symposiums will lead to the inclusion of IBC on future conference agendas.

RESEARCH

The Inflammatory Breast Cancer Network UK has been supporting UK IBC research at the University of Birmingham since 2017. We are the only UK Charity supporting this vital research. Our research team is working on understanding the IBC tumour microenvironment to develop possible immunotherapies for the future.

Monitoring Performance & Impact

One area of development for the Charity over the next few months and years will be improving our monitoring of performance and impact. Some of the key performance indicators that we would hope to track are:

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

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Our Funding

We would not exist without the incredible generosity and support of our fundraisers, donors, members and their families affected by inflammatory breast cancer, who know first-hand what it is like to live with or in the shadow of this disease. It is as a result of their efforts and donations that we are able to meet our goals and carry out our vital work.

We would like to give a big thank you to everyone who has helped us continue our work. What we do is purely funded by these fundraisers and donations and while we will look to diversify our income by applying for any grants for which the Charity may be eligible, we will always need our supporters.

Here are some particular highlights from 2023/24:

FUNDRAISING

Through various activities, our amazing fundraisers, donors and supporters have raised in excess of £441,000 for The Inflammatory Breast Cancer Network UK since inception of the Chaity. This has been raised through virtual and in-person fundraising and we hope to surpass the £500,000 milestone in 2024/2025.

Everything we have achieved is thanks to their generous support.

Supporter Impact

The Inflammatory Breast Cancer Network UK does not receive any statutory or NHS Funding. All of our charitable activities are made possible thanks to the generosity of others.

Thanks to our amazing supporters and donors, we raised much needed funds to help patient members and their families, as well supporting UK research into inflammatory breast cancer.

Fundraising Challenges

We received donations from people taking part in fundraising challenges this year and we’re so impressed by the amazing activities people chose to challenge themselves with, including marathons, cycling events, sponsored swims, skydiving and parachuting, coffee mornings/afternoon teas, crafting, to name but a few.

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

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Donations in Memory of Loved Ones

We are always touched when families remember The Inflammatory Breast Cancer Network UK after their loved one has passed away.

Some families choose to donate in their memory after a funeral and others fundraise as part of a celebration of their life at different milestones in the years that follow.

Working Partnerships

We are delighted to work in partnership with businesses who want to support the charity by donating all or a percentage of their profit or sales to The Inflammatory Breast Cancer Network UK.

HOW TO DONATE To help ensure the long-term sustainability of our charity, please consider making a donation via our website at www.ibcnetworkuk.org Every contribution helps us provide essential support to those affected by this rare and aggressive disease and fund vital research into inflammatory breast cancer. Thank you for your generosity. Together, we can make a difference.

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 have continued to work closely with clinical IBC specialists and IBC organisations. We have also formed excellent working relationships with other charities who provide cancer services and have brought these services to our own members to ensure they received the best package of care around them. Working together includes cross-referrals between organisations, helps to create and spread awareness about inflammatory breast cancer and ultimately, by collaborating with others, makes us stronger together.

THE IBC CLINIC

PROFESSOR DAN REA

Medical Oncology and Honorary Consultant in Medical Oncology University Hospitals, Birmingham

PROFESSOR ABEER SHAABAN

Specialist Breast Pathologist University Hospitals, Birmingham

DR NAREN BASU

Leading Consultant of Oncoplastic Breast Surgeon University Hospitals, Birmingham

DR FEDOR BERDITCHEVSKI Researcher University of Birmingham, Institute of Cancer & Genomic Sciences

MS JACKIE DONNELLY

IBC Specialist Breast Care Nurse University Hospitals, Birmingham

The IBC Clinic, led by Prof. Dan Rea has made significant strides in addressing the challenges of diagnosing and treating Inflammatory Breast Cancer (IBC). Established in 2022 with limited initial funding, the clinic has grown into a vital resource, operating as a one-stop, multi-disciplinary team (MDT) service one morning per week. Since its inception, the clinic has supported 48 patients, aged 33 - 72 years (mean: 58.4 years) with the majority presenting with Grade 3 disease. Their imaging revealed diffuse changes rather than a distinct mass, as is often the case with inflammatory breast cancer and a key contributing factor in diagnostic delay. The clinical team were able to influence adjusted chemotherapy and immunotherapy treatment for 21 internal patients, achieving 38% pathological complete response (Path CR). The clinic aims to continue its work toward improving survival rates, reducing delays in diagnosis and advancing IBC research, with the ultimate goal of setting a national standard for care.

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

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Key future initiatives for the IBC Clinic include:

  1. Raising Awareness Among GPs: With support from The Inflammatory Breast Cancer Network UK, efforts are ongoing to educate general practitioners on recognising the distinct symptoms of IBC.

  2. Future Planning:

  3. ➢ Develop national IBC guidelines.

  4. ➢ Replicate the clinic model regionally across the UK.

  5. ➢ Establish an IBC patient registry.

  6. ➢ Initiate a fresh tissue collection pilot study (with ethics approval) and explore thermography and contrast-enhanced mammography.

  7. Addressing Health Disparities: Recognising the delay in diagnosis among ethnic minority patients, particularly due to differences in skin presentation (darker or purple tones rather than pink), highlights the need for greater inclusivity and awareness.

ORGANISATIONS

INFLAMMATORY BREAST CANCER – INTERNATIONAL CONSORTIUM (IBC-IC)

EURORDIS Rare Diseases Europe

FUTUREDREAMS

CANCER CARD

EUROPEAN INFLAMMATORY BREAST CANCER CONSORTIUM (EIBCC)

EIBCC

European Inflammatory Breast Cancer Consortium

KNOW YOUR LEMONS

LITTLE LIFTS

RADIADERM

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

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Trustees & Volunteers

Board of Trustees

Our trustees who served during the financial year 2023-2024 are:

Autumn Morris
Chairperson		 Appointed 18th December 2021
(Trustee since 12th June 2019)
Resigned 18th December 2024
Naomi John
Vice-Chair,Interim Chair of Trustees		 Appointed 16th August 2023
(Trustee since 12th May 2022)
Ongoing
Lucy Reynolds
Secretary		 Appointed 16th August 2023
(Trustee since 12th May 2022)
Ongoing
Catherine (Cassy) Simpson
Treasurer		 Appointed 18th December 2021
(Trustee since 28th January 2020)
Resigned 31st August 2024
Becky Wright
Assistant Treasurer		 Appointed 24th January 2024
(Volunteer since 18th April 2023)
Ongoing
Melanie Crooks
Treasurer		 Appointed 20th November 2024
Ongoing
Richard Amos
Scientific Advisor		 Appointed 18th December 2021
(Trustee since 29th November 2017)
Ongoing

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

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Diana Broughton Appointed 20th September 2023 Fundraising Manager (Volunteer since 19th April 2023) Resigned 8th January 2025 Mandy Penman Appointed 11th March 2022 Website Manager Resigned 31st October 2023

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

Our volunteers who served during the financial year 2023-2024.

Caroline Ballinger
Support Services Manager and
Honorary President		 Appointed 18th January 2024
(Founder & Previous Trustee)
Ongoing
Lorna Whyte
Support Service Assistant		 Appointed 7th June 2023
Ongoing
Ashleigh Williams
Fundraising Assist. Manager		 Appointed 26th September 2023
*Trustee from 21st June 2024
Ongoing
Sara Bonnell
Assistant Administrator		 Appointed 19th March 2023
Ongoing

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

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Liam Morris
Website Manager		 Appointed 22nd April 2024
Ongoing
Rachael Honey
Website Coordinator		 Appointed 23rd March 2023
Ongoing

Charity Ambassadors

Heidi Loughlin
Charity Ambassador		 Appointed 29thNovember 2017
Ongoing

The Inflammatory Breast Cancer Network UK is a 100% volunteer-led charity.

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 2023 to 5 April 2024

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 2024. The accounts have been prepared in accordance with the Accounting Policies set out on Page X 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:

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 19.

Financial & Operating Review

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

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

22

The 2023/24 headline income figure of £79,575 shows an overall significant increase of £18,323 or 30% compared to £61,252 in the prior year. 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 or friend. It is through their efforts that our income has increased year on year.

A pictorial analysis of our funding is shown below:

During 2023/24 we slightly reduced our spending at £78,794 compared to £82,172 in the prior year; a reduction of £3,378 or 4%. We also re-focused our efforts in how we spend our time and resources across our charitable activities of research grants, awareness raising and member support activities and in addition to investing in fundraising support.

A pictorial analysis of how we support our charitable mission is as follows:

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

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Most of our expenditure relates to supporting the University of Birmingham’s specialised research programme into inflammatory breast cancer – the only university currently in the UK who undertakes such research.

We contributed £67,774 in the year (2022/23: £77,767) towards this important work.

As noted elsewhere in the Trustees‘ Report, we focused energy on furthering our awareness raising activities, for example participating in medical community conferences. We invested £8,296 (2023: £1,351) in this key area of activity. 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 was approximately break even, a small surplus of £781 compared to the prior year deficit of (£20,920).

Our funds in their entirety are unrestricted in nature. On 5 April 2024 our unrestricted cash funds stood at £32,008 (2023: £31,227).

Reserves Policy

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

It is considered that given the nature of the Charity’s operational model that significant reserves are not required. The Charity employs no staff and has no premises. Although the largest part of our expenditure is in research grants, we are not contractually obliged to make such grants.

During 2023/2024 it was considered that free unrestricted reserves of £3,000 (in the form of cash at bank) would be adequate – this policy was met at the year end date. Post year end, the Trustees undertook a further review of the adequacy of the current free reserve policy and in the light of operating model priorities this was amended to £6000. This revised policy if it had been in place as at 5 April 2024 would have been met.

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 Trustees are 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 LLP as Independent Examiner.

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

24

Risk Management Risk Management In the financial period, the Charity adopied a new risk manaEementfraMeWo￿. While this new frarnework 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 15 considered at a meeting of the Trustees at least quarterly. Trustees, Responsibilities in Relation to the Financial Statements Law applicable io charities In England & Wales requi￿5 the Trustees lo p￿pa￿ account5 for each financial year whtth give5 3 true and fair view of the Charity's financial activities during the year and of its financial position at the end tsf the year. ln preparing these accounts. the Trustees are required to.. Select suitable accounting policies and ihen apply them consistentty Observes the method5 and principles of the Charities SORP Make judgement5 and estimates that are reasonable and prvdent State whether applicable accountin8 standards and statetnent5 of recommended practice have been followed. subjett to any material departure5 disclosed and explained in the account5.' and Prepare the accounts on a going concern ba515 unless it is inappropriate to presume that the Charity will continue in business. The Trustees are re5wnsible for keeping proper accounting records wbTEh disclose, with Teasonable accuracy at any time, the financial posltion of the Charity. This enable5 the Trustees to ascertain the financial position of the Charity and to ensure that the account5 cornply with the Charitie5 Legislation. They are also responsible for safeguarding the assets of the Charity and hence, taking reasonable step5 for the p￿ve￿tIOn and detettion of fraud and other irregularities. Approved by order of the members of the board of Trustees on 28 February 2025 and signed on their behalf by. Naomi John- lftterim Chair olTrustses ThÈ Inffl?mmJtory BieastCanterNthork itysttred i￿￿10 Enoand &wa￿lI171635) a￿￿0￿8￿15c052ao3} 25 The Inflammatory Breast Cancer Network isa registered charity in England & wa￿5(1177635l and Scotland ISCO523031 25

Independent Examiner's Report Independent Examiners Report To rho Trusiees ofThe Inflarnmaw Breast 14•twot UK Ye•r ended 5- ￿•r11 2024 I fewrt on xcounts of Tl Infvmmatory 8reasi C•ntr Nets￿rk UK ftyt￿ year ended 5" ApIII 2024. are set oui on Pa8¢$ 27 to 31. Res ective Res onslbilltles of Trustees & Inde ndent Examiner The ChariW5 Trusiee5 are responsib lor preparat￿n ol the accourtis. The Charity's Trtsstees consKler thai ChariLy i5 el81b￿ for exwnptlon fThn •udli byfflue of Seoi¢)n 144121 ol the Charities 2￿1 (The Actl. frAy examimtron olthe Kcomis is urts Sxlion 145 of Tr Aft. and It is my It4￿$1b1Y to slate, based Pfoceaures speufd In the Genernl DIrert￿n$¢￿efi Charity Cornmissi¢nefS under secti￿ 14515llbl of Ac¢. matiors hm wme my aNen(w. Basis of Inde endent Examinerfs Re ort My exarn1Trat￿n Is carried oui in I￿0￿1•￿t WAth Gener•1 ￿TeCtI￿s@￿en ty Chariry commiJS￿er5. An e¥amln•rion ￿￿1￿￿$ a rewew of the rKords knpt by Tho Chatty iomparlson of the accounts presented wirh thse ￿cOrdS. It a150 irKlude5 con$¥lerèi￿ft ony unusual items oi disclosures in the Kcounlj. soekini eX￿￿n￿l￿rffj from you. as Trustees. concemir ary such motters. procedwe5 urnkrtaken do not prowde all the e¥idence thai be iequirtd in an aL￿rt corwquentty I do ewessan )￿rt oplnion on the ¥w gprtn ty the ￿ounts. Inde endent Examinerfs Statement In thE rwr5e ofmy matttf has trrfw to my atteniknn whkh.. i¥es me ￿050￿•ble ru5e to bdiert tw ifi any motrrwl reswtt t1 miuireffents.. io keep Kioynt record5 in arcordance wllh Setiion 130 of a.' and io prepa￿ acc(Wts whKha¢cord wilh the •tcuuntin8 rerords a￿1 comply ith the xrniintin8 ryqvirerynts of Th• Act ha¥• rnt I￿n mei,. or in my opinrf#). atteniion bt dra¥m in grder io e￿bIl a wopw ￿￿erStlnI of the arcounls to be reathed. Mark Gurney FCCA DChA 28 Febrnary 2025 Ctsins AthJit ￿Mr(el 8irmirqharn 26 The Inflammatory Breast Cancer Network isa registered charity in England & wa￿5(1177635l and Scotland ISCO523031 26

Receipts and Payment Account For Year Ending 5 April 2024

Note
Receipts
Donations
3
Grants
3
Other Fundraising income
3
Investment Income
3
Total Receipts
Payments
Activities to raise funds
4
Direct Charitable Activities:
Grants paid for Research
4
Awareness Raising activities
4
Member Support Activities
4
Administration and Governance
4
Total Payments
Net Receipts/(Payments) for the year
Transfers between Funds
Cash at Bank at start of year
Cash at Bank at end of year		 Unrestricted
Unrestricted
General
General
Fund
Fund
2024
2023
£
£
73,340
60,353
2,000
0
3,940
845
295
54
79,575
61,252
935
382
67,774
77,767
8,296
1,351
333
1,117
1,456
1,555
78,794
82,172
781
(20,920)
0
0
31,227
52,147
32,008
31,227

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

27

Statement of Assets & Liabilities as at 5 April 2024

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

28

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 are comprised of 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:
Donations from individuals
Donations from organisations
Gift Aid Received from HMRC
Total Donations
Grants:
The Churchill Foundation
Total Grants income
Other Fundraising Income:
Lotto
Race Tops
Total Other Fundraising Income
Investment Income:
Interest on deposit account
Total Investment Income		 UnrestrictedUnrestricted
General
General
Fund
Fund
2024
2023
£
£
61,374
54,086
3,101
3,867
8,865
2,400
73,340
60,353
2,000
0
2000
0
2,975
845
965
0
3,940
845
295
54
295
54

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

29

4.
Further Analysis of Payments
Activities to raise funds:
Fundraising Regulator fee
Publicity & Fundraising materials
Total Activities to raise funds
Direct Charitable Activities:
Grants paid for Research:
University of Birmingham grants
Total Grants paid for Research
Awareness Raising activities:
Conference attendance
Travel & Subsistence associated with awareness
raising activities
Awareness raising materials
Total Awareness Raising activities
Member Support Activities:
Technology costs for Support Work
Member Support materials
Member Meet Ups
Total Member Support Activities
Administration and Governance:
Technology including website
Insurance
Postage
Sundry		 Unrestricted
Unrestricted
General
General
Fund
Fund
2024
2023
£
£
50
50
885
332		 Unrestricted
Unrestricted
General
General
Fund
Fund
2024
2023
£
£
50
50
885
332		 Unrestricted
Unrestricted
General
General
Fund
Fund
2024
2023
£
£
50
50
885
332
935 382
67774
77,767
67,774
77,767
3845
385
2894
886
1557
80
8,296
1,351
20
1,084
0
33
313
0
333
1,117
1119
1,283
96
96
98
71
143
105
1,456
1,555

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

30

5. Trustees and Related Party Transactions

During the year, no Trustee received remuneration as Trustee (2023:£nil). Trustees received out of pocket expenses, totalling £4,455 for 5 trustees (2023:£660 for 4 trustees).

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

31

Legal & Administrative Information

Charity Details

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

Governing Document

Revised Constitution dated 16[th] June 2022

Social Media

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

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

32

Thank you!

Donors & Fundraisers

We appreciate each of our donors and fundraisers who help ensure IBC research continues in the UK, and who enable us to support individuals who have received a diagnosis of IBC, along with supporting family members and carers of those affected by inflammatory breast cancer.

Healthcare Professionals

Our sincere thanks to all the healthcare professionals working with us to ensure patients receive the correct treatment pathways and protocols, and for supporting our efforts to raise awareness of Inflammatory Breast Cancer.

IBC Researchers

With heartfelt thanks to our researchers at the University of Birmingham for their years of dedication to the IBC Research Programme, and to the Collaborative Research Team at the Universities of Birmingham and Antwerp.

Supporters

We are extremely grateful to our supporters who have provided advice, grants and support to The IBC Network UK and for assisting us with reaching our goals.

The IBC Clinic University Hospitals Birmingham

With huge thanks to The IBC Clinic team at University Hospitals Birmingham, NHS Foundation Trust – the first dedicated IBC Clinic in the UK – for their hard work, expertise and relationship with The IBC Network UK.

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

33