The LAM community has always understood something powerful: the people living with this disease are essential partners in advancing research. Today, we are proud to celebrate an important milestone that demonstrates the impact of that partnership.

An abstract titled “Integrating Patient-Identified Research Priorities and Addressing Healthcare Disparities in Lymphangioleiomyomatosis” was selected as a top-scoring poster at the European Conference on Rare Diseases & Orphan Products (ECRD) 2026 in Prague.

This recognition shines an international spotlight on the LAM-PREP (LAM Patient Research Priorities) study, an initiative designed to answer a fundamental question: How can LAM research better reflect the needs and experiences of people living with the disease?

The answer is both encouraging and inspiring.

The findings revealed that the LAM community remains united around a shared goal, discovering new treatments and ultimately a cure. At the same time, participants identified critical areas that deserve greater attention, including comprehensive care, mental health, women’s health, and equitable access to diagnosis and treatment.

These priorities provide a roadmap for the future of LAM research. More importantly, they ensure that scientific progress remains connected to the realities patients face every day.

The LAM Foundation’s Board of Directors recognized the importance of these findings and acted. As part of the organization’s strategic planning process, the Board adopted key themes from the LAM-PREP study, helping ensure that patient-identified priorities will continue to guide decision-making, program development, and investments in research.

This commitment reflects one of The LAM Foundation’s core beliefs: the most meaningful progress happens when science and lived experience work together.

The opportunity to present these findings at ECRD 2026 represents more than recognition for a single study. It is an opportunity to share the voice of the LAM community with researchers, clinicians, advocates, policymakers, and rare disease organizations from around the world. It demonstrates how patient-centered research can inform scientific priorities, strengthen systems, and advance equity in rare disease care.

Every breakthrough begins with understanding what patients need most. Through LAM-PREP, the community has helped define those needs with clarity and purpose.

The LAM Foundation extends its heartfelt congratulations to Dr. Lyndsay M. Hoy, Vice Chair for Strategy and Mission on the Board of Directors, and Dr. Marina K. Holz, Chair of the Scientific Advisory Board, whose leadership and collaboration were instrumental in advancing this important work. Their dedication has helped ensure that patient perspectives remain at the center of research and strategic planning.

Together, we are advancing science, strengthening care, and closing the distance between discovery and the women who need it most.

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