LAM Patient Research Priorities Survey Now Open

Dear LAM Community Members,

The LAM Foundation prioritizes supporting LAM scientific research, funding a wide range of projects and initiatives. To maximize impact for LAM patients, we are committed to gaining a deeper understanding of the health needs and research priorities within the LAM community.

In 2023, we launched the LAM Patient Research Priorities Survey (LAM-PREP). This patient-centered initiative comprises two phases. The first phase, involving focus groups with LAM patients, loved ones, and caregivers, aimed to identify critical clinical and biomedical research areas as perceived by the community. We successfully completed this phase, conducting three in-person focus groups and two virtual ones to gather insights from a diverse range of participants.

We are excited to announce the launch of the second phase—a comprehensive community-wide survey. This survey, which is based on the insights gleaned from the focus groups, aims to determine the highest-priority topics for patients, clinicians, and researchers. The valuable input gathered through this survey will aid in generating impactful requests for proposals and recommending projects for funding by The LAM Foundation Board of Directors.

To participate in this anonymous 10-15 minute survey, click here.

Kindly note that the objective of this survey is to assess the perspectives of LAM community members regarding health needs and future research priorities. The content of this survey is not intended to offer conclusive information or serve as a replacement for professional medical guidance, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider for any inquiries you may have regarding a medical condition. Please do not disregard professional medical advice or postpone seeking it based on any information gathered or interpreted from this survey.

Questions? Please contact The LAM Foundation via email at or by phone at 513-777-6889.

Thank You!

The LAM Foundation