Campaign & Policy Priorities

At The IBC Network UK, we push for better information, targeted research, faster diagnosis and effective treatment guidelines for Inflammatory Breast Cancer (IBC) across the UK. That means running awareness campaigns, engaging government and the NHS, and mobilising supporters to improve outcomes for everyone affected by IBC.

A colourful promotional banner for IBC Awareness Day on October 4th with an orange background, pink and purple accents, an orange, a QR code, and the message #WEARITORANGE.

Wear It Orange

A circular poster for Breast Cancer Awareness Month, promoting October 4, 2025, with the hashtag #WearItOrange, featuring logos for the Inflammatory Breast Cancer Network UK and a pink ribbon symbolising breast cancer awareness, and an orange fruit.

Wear It Orange is our awareness movement to highlight more common symptoms of inflammatory breast cancer (dimpling/thickening of the skin similar to orange peel, or peau d’orange).

It centres on IBC Awareness Day, which takes place each year on 4th October, during Breast cancer Awareness Month.

But we encourage you to Wear It Orange at any time of the year.

Join us to spark conversations, share symptoms knowledge and help people get timely care.

We are the Orange in the Pink!

Wear It Orange
Wear It Orange
Press Release
Press Release

Key Issues & Policy Gaps

  • Medical clipboard with a pink cross symbol, lines of text, and a signature at the bottom.

    LACK OF SPECIFIC IBC DATA

    - Inflammatory breast cancer (IBC) is not currently recorded as a separate diagnosis in national cancer registries. This makes it difficult to understand how many people are affected, their outcomes and what services they need.

    - There is no specific ICD-10 code for IBC. ICD-10 is the international system used to classify and record diseases.

    - NHS data systems do not currently separate IBC from other types of breast cancer, which limits progress in research, policy, service planning and improvement.

    - Without a dedicated ICD code or accurate data analysis, IBC cases are often hidden within broader breast cancer statistics, making it harder to identify trends or allocate resources effectively.

  • A colorful illustration of a microscope with orange, pink, white, and black accents on a black background.

    GAPS IN SCREENING & DIAGNOSIS PATHWAYS

    - IBC is often not detected by mammograms. Planned AI mammography trials are unlikely to help people with IBC.

    - People with IBC symptoms sometimes receive “no lump detected” letters without clear guidance on next steps, such as ultrasound or biopsy.

    - IBC is often misdiagnosed as mastitis, an infection of the breast. This can delay treatment and lower chances of survival.

  • Graphic illustration of medical and scientific research icons, including pills, a DNA strand, a microscope, a syringe, a clock, and a molecular structure.

    LIMITED ACCESS TO EXPERTISE

    - There are currently no NICE (National Institute for Health and Care Excellence) guidelines specifically for IBC to standardise urgent, evidence-based care.

    - There are no UK specific IBC guidelines. Adherence to the International Standard of Care for IBC is recommended, but optional.

    - The UK has only one NHS clinic dedicated to IBC, based in Birmingham. The IBC clinic is led by a consultant oncologist and consultant breast surgeon, and supported by a specialist cancer nurse (CNS), with access to radiology experts, allied health professionals and clinical researchers.

What can you do to help?

Telling your story on our website

A woman taking a selfie outdoors on a grassy field with a dog in the background. The woman is smiling and wearing a black jacket. The background shows a cloudy sky and an open field. There is a quote overlay that says, 'Reach out to support groups - join the IBC Network UK,' and an orange label reading 'Giovanna's Story.'
Share your story now
Share your story now

Share awareness of IBC

Sharing IBC symptom information and our Wear It Orange resources on social media. Talk about the Orange breast cancer and the inequalities of funding.

Three women sitting on couches having a conversation, with a camera filming them in the foreground. There are colourful decorations and a flower arrangement on a table.
Person holding two halves of an orange, wearing a white T-shirt with a pink ribbon and IBC logo sticker, with an orange background.

Want to do something more?

Writing to your MP about the policy actions above. Contact us to get involved—we’ll keep you updated on concrete actions you can take. We won’t share your details with anyone else. Read how we protect your data in our Privacy Policy.

Two women riding orange stationary bikes with blender attachments at an event booth, with one woman wearing orange sunglasses and the other laughing, both wearing black tops and orange pants.
Find my MP
Find my MP