Lobular Breast Cancer Alliance Advocate Registry Available

Are you interested in joining our advocate registry?

The Lobular Breast Cancer Alliance (LBCA) is seeking to build a registry of advocates. If you have experience working with researchers as a research advocate or you want to get more involved with raising awareness and advocacy in your community, please consider adding your name to our registry.

The information you provide will only be used for the two distinct and separate uses described below. You can choose one or both reasons to be included in the registry by completing the signup form.

The first reason LBCA seeks to grow our advocate registry is to connect trained advocates with researchers seeking patient advocate partners. Many funding solicitations, including those issued by LBCA, include a requirement for scientists to engage research advocates in the application and grant implementation processes.

LBCA anticipates that we may be contacted by researchers seeking patient advocates with experience and/or training in research advocacy. Our aim is to be ready with a list of contacts, including appropriate information about training and experience, so that we can share a name, contact information, and past experience with those researchers. At this point, LBCA will not match scientists to research advocates but rather will provide the list (either in its entirety or with selected advocates based on need and/or geography) to the researcher. They would then reach out to advocates directly.

The second separate goal for our advocate registry is to foster connections between individuals in specific geographic areas who wish to raise awareness about ILC in their communities. Are you someone who would like to find others near you to connect with and to figure out ways you might spread the word about ILC together? For example, you might be treated at the same facility and together can approach the breast cancer oncologists to share information about ILC and LBCA as a resource for patients. There is strength in numbers when initiating contact with your local research institutions and/or patient advocate groups!

If you would like us to share your contact information with other patient advocates in your area seeking to make a connection, please add your name and preferred method of contact in the form.

It is important to note that there are other resources where individuals can be matched with trained peer mentors with ILC to get emotional support. The ILC advocate registry is not meant to match people for this reason. For those looking to connect with others for support, please visit our Find Support page.

To learn more about research advocacy training visit our Advocacy Toolkit. If you have questions about this registry, please email Mason at mason@lobularbreastcancer.org. For more information about lobular breast cancer or to make a gift visit lobularbreastcancer.org.
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