In January 2022, the Lobular Breast Cancer Alliance (LBCA) asked its 4,100 newsletter subscribers for feedback about the content and frequency of this publication. We thank everyone who responded to the survey.

Survey Results

Survey respondents confirmed our hopes that overall our newsletter, which we send to you monthly monthly via Mailchimp, is delivering appealing and credible content in the most desired timeframe and frequency. Here are some highlights:

• The majority of  respondents said they share at least some of the stories with others.
• More than ¾ of respondents reported no issues with understanding the scientific information in the newsletter. Some suggestions for how we might make content more easily understood included:
  • Explain more technical terms and why they are important
  • Be clear about the clinical applications
  • Link key terms to definitions
  • Continue to try and write for a lay audience
• When asked what types of articles were of most interest to our readers, the top responses were:
  • News on advances in knowledge about lobular breast cancer at all stages
  • Clinical trials
  • Research and educational advocacy tools
  • Research publications
  • Links to educational videos and podcasts
  • Events of interest or of relevance to ILC
  • Patients’ stories (My ILC Stories)

We also received some ideas for new content including discussions of our international collaborations, updates on treatment protocols and guidelines if any, and a “good news” column.

LBCA once again thanks you for your feedback. We look forward to sharing and discussing all of the input and ideas we received with our Patient Advocacy Advisory Board and Scientific Advisory Board members. Look for changes to the newsletter based on your feedback in the coming months.