Uniting Patient Voices
and Science
for a Better
Future
Welcome to the European Lobular Breast Advocates (ELBCA), a patient-led network empowering voices, advancing research, and driving change for all those affected by lobular breast cancer.
Together with the European Lobular Breast Cancer Consortium (ELBCC), we have been raising awareness, connecting patients and researchers since 2019 to improve diagnosis, treatment and care across Europe and beyond.
Learn. Connect. Advocate.
Why Lobular Breast Cancer Deserves More Attention?
Breast cancer is the #1 cancer among women in Europe.
1 in 7 breast cancer patient has lobular breast cancer.
Invasive Lobular Carcinoma (ILC) is the 2nd most common breast cancer type in women – more common than ovarian, liver, and oesophageal cancer combined,
yet it receives less than 1% of breast cancer research funding.
- Lobular breast cancer does not form a lump, making it hard to detect and monitor with standard imaging.
- Chemotherapy often does not work well in ILC treatment.
- There is still no effective or tailored treatment for metastatic ILC.
This has to change!
Funding lobular research is essential to improve outcomes for the tens of thousands affected ILC patients.
Lets make a difference!
2nd most common type of breast cancer
Harder to detect with standard imaging — may go unnoticed for longer, leading to delayed diagnosis and treatment
Receives less than 1% of breast cancer research funding
ILC specific clinical trials are needed!
Real Stories. Real Challenges. Every Voice Matters.
I want to live without guessing.
“ My mammogram was clear, yet five months later I was diagnosed with lobular breast cancer. I’ve had surgery, radiotherapy, and hormone therapy.
My scans are clear now.
But how can I trust them when mammograms missed it before?
There’s no tailored follow-up plan for ILC. I feel like I’m being monitored with tools not designed for my disease.
We deserve strategies that reflect lobular biology – not ductal assumptions.
— Early-stage ILC patient, diagnosed 3 years ago
We need research that gives us choices.
“ When I was diagnosed with lobular breast cancer, I was shocked by how little research exists.
I went through months of chemotherapy – nausea, fatigue, hair loss – only to learn lobular often responds poorly to it. ILC behaves differently, yet most treatments are based on ductal data.
I’m grateful to be in remission, but I still wonder: was chemo necessary?
We need research that gives patients informed choices – not one-size-fits-all care.
— ILC patient, in remission
We need treatments designed for lobular.
“ I was first diagnosed 12 years ago. When my cancer returned in my bones, I learned it had become metastatic lobular breast cancer.
My first-line treatment failed within months, and I couldn’t join a clinical trial because ILC wasn’t included – its biology made me ineligible.
It’s frustrating not knowing if treatments will work, or for how long, when they’re not tailored to my cancer.
We need therapies – and trials – designed for lobular.
— Metastatic ILC patient
Connect with our Patient Advocates
Meet the Voices Driving Change
Behind every statistic is a story – and our patient advocates are here to share theirs. Spread across Europe, we represent diverse experiences and perspectives, and you can connect with someone from your own country.
Together, we help make patient voices heard in research, shape better care, and support everyone affected by lobular breast cancer.
Reach out to learn, share or join this growing community.
From Awareness to Impact - Our Goals
We are working together with the European Lobular Breast Cancer Consortium (ELBCC) to improve the understanding, care and outcomes for everyone affected by lobular breast cancer.
1. Fund What Matters
- Secure dedicated research funding to improve diagnosis, treatment, and outcomes for lobular breast cancer (ILC).
2. Define Research Priorities
- Identify and advance key areas of ILC-specific science – from biology to imaging to therapy.
3. Raise Awareness Across Europe
- Empower patients and the public with knowledge about lobular breast cancer’s distinct challenges.
4. Push for Policy Recognition
- Advocate for ILC to be recognized as a distinct disease in EU cancer policy and funding frameworks.
5. Educate Healthcare Providers
- Provide resources to primary care and oncology professionals to improve early detection, diagnosis and management of ILC.
6. Foster Collaboration
- Build strong partnerships with leading researchers, clinicians, and advocacy groups dedicated to lobular breast cancer.
Together with Experts
Meet our Scientific Advisory Group
Our mission is supported by a dedicated team of ELBCC researchers and medical experts across Europe and beyond.
Working hand-in-hand with patient advocates, they help raise awareness, share the latest scientific developments and guide research priorities.
This collaboration ensures that the information we share is reliable and supported by our advisors, while also making sure the patient voice is heard in research discussions and every step contributes to better outcomes for patients.
Advocacy Without Borders
Learn more about our International ILC Advocacy Partners
We work closely with dedicated advocacy groups around the world, sharing experiences, learning from each other, and exchanging ideas.
By connecting globally, we can tackle challenges together, celebrate advances, and strengthen our impact — ensuring that patient voices are heard everywhere and that best practices benefit people with ILC worldwide.
Learn more about out International ILC Advocacy Partners
We work closely with dedicated advocacy groups around the world, sharing experiences, learning from each other, and exchanging ideas.
By connecting globally, we can tackle challenges together, celebrate advances, and strengthen our impact — ensuring that patient voices are heard everywhere and that best practices benefit people with ILC worldwide.
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