25 Jul Welcome to the LBCA
The Lobular Breast Cancer Alliance (LBCA) is a national network of patient-advocates with lobular breast cancer working with a scientific advisory board of breast cancer researchers and clinicians. LBCA advocates for ILC research and educates about lobular breast disease.
LBCA’s mission is to bridge patients, clinicians and researchers to increase our knowledge of lobular breast disease and promote research that leads to advances in prevention, diagnosis, treatment and patient follow-up care.
> Advance ILC Research, including ILC specific and inclusive clinical trials and studies to better understand this disease and find targeted therapies
> Link patients with ILC to research advocacy opportunities as patient advocate partners and participants
> Build partnerships with breast cancer organizations and institutions to integrate ILC into existing breast cancer services, resources and research
> Educate key audiences and raise awareness about ILC and ILC metastatic disease
About the Organization
LBCA is run by a volunteer steering committee of patients with lobular breast cancer living throughout the United States and led by two volunteer coordinators. LBCA is advised by an international Scientific Advisory Board and a Scientific Editorial Board of researchers and clinicians who focus on lobular breast cancer. We utilize contractors and consultants to supplement our efforts and provide expertise. LBCA was formed by patient advocates who attended the First International Lobular Breast Cancer Symposium held in Pittsburgh, PA in fall 2016. After the Symposium, patients developed a white paper outlining patient advocate identified needs for research in lobular breast cancer which serve as the basis of advocacy for LBCA. More about LBCA’s leadership.
LBCA is funded by donations from patients and individuals who are impacted by lobular breast cancer, and contributions from foundations and other 501 c3 not for profit organizations. We are a fiscally sponsored organization and have 501 (c)(3) tax exempt status as a project of Social and Environmental Entrepreneurs (SEE), a registered public charity. Donations to LBCA are tax-deductible. Learn more about LBCA’s fiscal sponsor and its mission to incubate and cultivate promising new organizations with the potential to make meaningful change. If you have questions and would like more information, please contact us at firstname.lastname@example.org.
Why is Lobular Breast Cancer Advocacy and Education Needed?
Invasive Lobular Breast Cancer (ILC) is a different cellular type of breast cancer that comprises 10–15% of all breast cancer with up to 40,000 new diagnoses a year in the US. ILC is under researched and can respond differently to commonly applied standard therapies and needs more research to 1) refine current treatments 2) identify targeted therapies, 3) refine and improve screening methods to detect ILC and its progression, and 4) describe appropriate follow-up care. Patients may not always be informed that they have ILC or its unique challenges. Healthcare providers are not always informed about the differences in the disease and treatment challenges it presents. ILC is frequently not included in breast cancer communications or within breast cancer community resources, is underrepresented at breast cancer conferences and meetings and publications, and is rarely segmented in existing clinical trials and studies with few lobular specific trials. Advocacy for more research requires communications and outreach to raise the profile of this disease with cancer research stakeholders (researchers, clinicians, patients and advocates) to advocate for additional resources for research.
Please Join Us!
LBCA welcomes patients with ILC, the clinicians who treat us and the researchers who are working to find cures, prevent our disease and refine treatments. Please join us! Please subscribe to receive periodic News and Updates by email and learn about new ILC resources and opportunities to advocate and be involved. Find us on Facebook and Twitter @LobularBCA
Thank you for joining us! We hope that by working together, we can elevate lobular breast cancer and advance research to improve outcomes for patients diagnosed with this disease.