In September 2022, the Lobular Breast Cancer Alliance (LBCA) asked its constituents for feedback about our performance. The survey, which was launched across our various digital media platforms and in our newsletter, asked questions regarding how LBCA has done relative to each of our five key goal areas and activities in support of our mission and vision. The following are the highlights of our results, which came from 291 respondents:

• 93%  of respondents agreed or strongly agreed that LBCA’s website and materials were easy to understand. About the same number think LBCA provides useful information about the differences between invasive lobular carcinoma (ILC) and invasive ductal carcinoma (IDC).
• 96% of those who responded said LBCA explains ILC and conveys the urgent need for more research.
• 88% of respondents perceive LBCA as the “go-to” website for ILC information.
• 82% of respondents who use the ILC Publications Library on our website indicated that they can find what they are looking for and the information is useful. Similarly, 88% of respondents who reported using LBCA’s patient advocacy tools and materials agreed they found the information useful.
• 63% indicated their awareness of  LBCA collaborations with other breast cancer advocacy groups in the US and globally. A few commented that this collaboration is effective because together organizations are better able to raise awareness and educate about ILC.

We were pleased to have received many comments from respondents about LBCA’s website and the work we do in support of our mission. Many noted approval and gratitude such as the following three:

•  “I’m incredibly grateful for the resources and advocacy provided by LBCA.”
•  “I appreciate reading other survivors’ stories. I read them every month.”
• “I would have been totally lost without the information available on your website, thank you!”

We also received many suggestions in response to a question about other organizations LBCA might collaborate with in the US and elsewhere in the future. We thank respondents for those suggestions.

We are glad to conclude from the survey results that it appears that LBCA is performing well and meeting the needs of our constituents. We will continue to ask for feedback like this in the future as we strive to work toward and, ultimately, to attain our vision of a world in which ILC is found early, treated effectively, and eradicated permanently.