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 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.

In early March, you will receive an email from patientservices@thelamfoundation.org with the subject line “We want to hear from you”, containing the link to the survey. Your opinion is crucial, so please ensure your voice is heard!

Sincerely,

Marina Holz, PhD