Allies

The Lobular Breast Cancer Alliance (LBCA) believes that accelerating the focus on ILC research world-wide requires cooperation among researchers and labs, breast cancer organizations, and advocacy groups.

One of LBCA’s goals is to partner with organizations across the globe to collectively advance invasive lobular carcinoma (ILC) research and education and expand and coordinate the network of ILC advocacy. We believe that together we are most effective at raising awareness and promoting lobular breast cancer research that includes and is meaningful to people with ILC. We strive to be inclusive in the events that we plan and implement, many collectively with our partnering groups. In this way, we will join forces and make as great an impact as possible toward eradicating ILC.

We are always cultivating new relationships with organizations so please check back for additions.

U.S. Partner Organizations

ShareCancerSupport.org focuses on breast and ovarian cancers. SHARE partners with LBCA to offer educational webinars on ILC and lobular specific peer support, which are archived on LBCA and SHARE’s websites. SHARE’s website includes a Tools and Resources section that includes webinars, videos, and blogs. The organization offers support services via helplines and groups, including lobular specific peer support on the National Hotline (844-275-7427). You can also sign up for their newsletter.

After Breast Cancer Diagnosis provides phone-based, one-to-one, customized emotional support for all those affected by breast cancer through its unique signature mentoring program. ILC advocates are invited to go through ABCD’s online training to become a Mentor offering one-to-one peer support.

Alamo Breast Cancer Foundation is an all-volunteer nonprofit organization focusing on breast cancer issues including education, support, advocacy and community outreach. Its mission is to end breast cancer by assisting patients, informing health professionals and policymakers, and expanding knowledge through education and community outreach.

GRASPcancer.org is the website for GRASP, a patient-led program that connects and empowers patients, clinicians, and researchers to exchange ideas and learn from each other. Together, patients and cancer researchers can advance more scientific breakthroughs. These bidirectional learning opportunities will drive the development of more impactful and fundable research and will make faster progress toward the development of therapies to end cancer. Unique from other programs, GRASP recognizes the value patients bring to research. Oncologists are experts in treating cancer, researchers are experts in studying cancer, but patients are experts in living with cancer. 

Other Allies

BreastCancer.org has educational links as well as patient-to-patient support via organized chat boards. Information on this site includes lobular-specific educational information and patient message boards.

Breast Cancer Research Foundation advances research with grants to top researchers and institutions around the world. The organization funded the First International Lobular Breast Cancer Symposium in Pittsburgh in 2016. Find webinars and a newsletter sign-up on the site.

BreastCancerTrials.org is a nonprofit service that encourages individuals affected by breast cancer to consider clinical trials as a routine option for care. The site has a searchable breast cancer clinical trials database.  Learn more about MetastaticTrialSearch here

Cancer.gov is the website of the National Cancer Institute, part of the National Institutes of Health.  This government- funded site has educational materials and guidelines for all cancers.

Cancer.org is the American Cancer Society’s website focusing on all cancers including breast cancer. The Society sponsors support programs for breast cancer patients throughout the country.

FORCE (Facing Our Risk Empowered) focuses on education and advocacy around hereditary bBreast, ovarian and related cancers, with information about genetic mutations linked to breast cancer. This includes the rare CDH1 mutation (Hereditary Diffuse Gastric Cancer Syndrome) that increases the risk of ILC and stomach cancer.

HereditaryDiffuseGastricCancer.org shares in-depth information specifically about the rare CDH1 inherited genetic mutation and the link to ILC and stomach cancer.

Living Beyond Breast Cancer is a national nonprofit organization that seeks to create a world that understands there is more than one way to have breast cancer.  Their site has information and support services for all breast cancers as well as a newsletter sign-up. Their breast cancer helpline (888-753-5222) includes volunteers with lobular breast cancer.  You can also find support here.  

MBCalliance.org is the website for the Metastatic Breast Cancer Alliance, a coalition of breast cancer groups with timely information and resources on metastatic breast cancer.

MBCproject.org, or the Metastatic Breast Cancer Project, is a new approach to cancer research where patients share samples and clinical information with researchers. This project is prioritizing lobular tumor samples for researchers. LBCA is a partner of the MBCProject. If you are a patient with metastatic ILC, learn how to sign up and identify yourself as lobular here

Metastatic Breast Cancer Network has a mission to educate, advocate, and empower those with metastatic breast cancer. They provide materials for both education and support. Metastatic Breast Cancer Network is funding research to better understand lobular metastasis. Go to the site to sign up for their newsletter.

Metavivor.org has educational materials on research, awareness, and peer-to-peer support for metastatic breast cancer patients. Go to the site to subscribe to their newsletter. 

 

NationalBreastCancer.org provides educational tools and support services for those with breast cancer.

 

Susan G. Komen Foundation offers educational links, hosts conferences, and funds breast cancer research grants. They also host a patient research advocate program titled Advocates In Science. 

International Partners

European Lobular Breast Cancer Consortium is a consortium of 24 institutions across Europe. It began in 2018 with the intention to develop a platform to bring together discovery scientists, translational researchers, and clinical experts with the ultimate goal to improve the understanding, diagnosis, treatmen,t and prognosis of women suffering from ILC. The consortium was founded by ILC researcher and LBCA Scientific Advisory Board member Patrick W.B. Derksen, PhD, of UMC Utrecht, and colleagues Christine Desmet, PhD, of KU Leuven, and Anne Vincent-Salomon, MD, PhD, of Institute Curie. 

Lobular Ireland is a network of patient-advocates with lobular breast cancer 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.

Lobular Breast Cancer UK logo

Lobular Breast Cancer UK (LBCUK) is a newly established charity working to ensure that lobular breast cancer is comprehensively understood, diagnosed effectively, treated uniformly, and there is support for patients across the four countries of the UK. They are led by people who have been diagnosed with ILC and commit to speaking up for themselves and anyone affected by it. They aim to increase and improve information about lobular; work collaboratively with researchers, clinicians, patients and stakeholders to ensure that research meets the needs of patients, and provide knowledge that leads to changes in treatment frameworks; and ensure that appropriate support and connections are available for patients to reduce the isolation and fear of an ILC diagnosis. Their Scientific Advisory Group, made up of clinicians and researchers from across the UK, ensures that all communications and information are based on sound scientific and medical evidence. The LBCUK website is launching soon.

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