Who we are
We are patients, researchers, advocates and allies from across Europe united by one goal: to make lobular breast cancer visible.
Why We’re Here
Invasive Lobular Carcinoma (ILC) is the 2nd most common breast cancer type in women – more common in women than ovarian, liver and oesophageal cancers combined – yet it receives less than 1% of breast cancer research funding.
Every patient deserves optimal care based on the biology of their disease: better imaging, smarter treatment, and research that truly reflects the reality of lobular cancer.
The Women Behind the Mission
Our movement began with women diagnosed with lobular breast cancer who realised how little attention it receives. Frustrated by the lack of awareness and tailored care, we decided to act. Today, our growing European community is dedicated to push for funding, inclusion and change – so that lobular patients are no longer overlooked.
We speak up so lobular breast cancer is seen, understood and prioritised.
Our Patient & Research Advocates
Siobhán Freeney
Ireland
Lobular Ireland
Silvia Knoll
Austria
Tone Lien
Norway
Rian Terveer-Couperus
Netherlands
Stichting Lobulair Borstkanker
Hélène Bonval
France
Claire Turner
United Kingdom
Lobular Breast Cancer UK
Esther Geven
Netherlands
Stichting Lobulair Borstkanker
Gabrielle Beck
Netherlands
Lejla Cengic
Germany
Andrea Lener
Isle of Man
Lobular Breast Cancer UK
Lori Petitti
Consultant Advocate, USA
Independent Advocate
From Awareness to Impact - Our Goals
We are working together with the European Lobular Breast Cancer Consortium (ELBCC) 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.
What We Do: Achievements
Together with ELBCC, we’ve created information leaflets about lobular breast cancer. Now available in multiple languages.
ELBC Advocates joined the European Lobular Breast Cancer Consortium meeting in Leuven 2019 – the first time that ILC Patients attended a meeting of the consortium.
Next steps
1
Establish European Charitable Status for ELBCAdvocates
2
Work to ensure that ILC is included in Clinical Trials
3
4
Find ILC funding
5
Our Global Partners
European Lobular Breast Cancer Consortium
The ELBCC was founded in 2018 with the intent to increase the understanding of the biological cues that underpin Invasive Lobular Breast Cancer (ILC). The main aim is to translate this knowledge into successful implementation for improved diagnosis, disease monitoring, treatment, and prognosis of ILC.
ELBCAdvocates were formed within the ELBCC COST Action LOBSTERPOT (CA19138), an EU funded initiative to facilitate Consortium building
To achieve its goals, the ELBCC has developed a multidisciplinary platform to bring together discovery scientists, translational researchers, clinical experts, and patient advocates. Together with Global peers, they organize regular meetings and a bi-annualyInternational ILC Symposium.
The joint ELBCC/ ELBCAdvocates approach is central and key in raising awareness for ILC, informing patients on the basics of ILC and the latest developments, and assuring an effective approach towards better diagnosis, treatment and disease outcome.
Our Scientific Advisory Group
Christine Desmedt, PhD
KU Leuven
Belgium
Anne Vincent-Salomon, MD, PhD
Institut Curie, Paris
Cathrin Brisken, MD, PhD
EPFL Lausanne
Switzerland
Patrick Derksen, PhD
UMC Utrecht
Netherlands
Chris Lord, PhD
Institute of Cancer Research
London
Our International ILC Advocacy Partners
Lobular Breast Cancer Alliance
The Lobular Breast Cancer Alliance is a US based organization whose mission is to:
- make all who are touched by Lobular Breast Cancer (ILC) aware of its unique characteristics and the critical need for more ILC research
- be the go-to source for information on ILC studies, clinical trials and educational tools
- foster partnerships among patients, scientists, clinicians, and breast cancer organizations to increase dialogue about ILC and research advocacy
- fund vital ILC research
Lobular Breast Cancer UK
At Lobular Breast Cancer UK we work to save more lives by unlocking the challenge that is Lobular Breast Cancer.
Our vision is that Lobular Breast Cancer is understood comprehensively, diagnosed effectively, treated uniformly, and patients have access to support across the UK.
Lobular Ireland
Lobular Ireland is a network of patient-advocates, with Lobular Breast Cancer (ILC), working closely alongside a scientific board of breast cancer researchers and clinicians.
Lobular Ireland advocates for research into ILC and aims to raise awareness about Invasive Lobular Breast Cancer.
Stichting Lobulair Borstkanker
We are a Dutch foundation, founded in late 2024, with the goal to raise money, awareness and education about lobular breast cancer.
Our mission is to improve health care (diagnosis, treatment, follow up) and survival rates for lobular breast cancer patients, with better quality of life.