THE LAM FOUNDATION STRATEGIC PLAN 2026-2030

30 Years Forward

Thirty years in, we know two things at once: our urgency for a cure has never eased, and the LAM community has never stopped moving.

This strategic plan is our promise for the next five years: faster discovery, stronger care, and a foundation built to last, so no one with LAM walks alone.

A YEAR OF WORK, MANY VOICES

The LAM Foundation Strategic Plan took a year to develop. It included input from more than 40 voices in the LAM community. This group included patients, clinicians, researchers, staff, and the Board of Directors. We base our strategy on LAM-PREP, our community priority-setting effort. This means it provides an accurate reflection of the needs of people living with LAM.

LAM-PREP: COMMUNITY PRIORITY SETTING

Why it matters

  • Built from 5 focus groups and over 750 survey respondents
  • Published as a peer-reviewed patient-centered research agenda (CHEST Pulmonary, 2025)

How we used it

  • Informed our mission, strategic goals, and research roadmap
  • Shaped clinic tools, network standards, and women’s health guidance

What we heard

  • New treatments—and ultimately a cure—remain the north star
  • Priority needs include: hormonal drivers, quality of life, and system-level gaps

VISION AND MISSION

Vision

A future without LAM.

Mission

To catalyze new treatments—and ultimately a cure—for LAM by advancing research, supporting compassionate care, and amplifying the voice of women with rare diseases.

Values

Our values guide our mission and help us improve lives in the LAM community.

  • Center LAM patients
  • Make progress visible
  • Lead in women’s health and rare diseases
  • Collaborate to cure
  • Earn trust

OUR FOUR STRATEGIC GOALS (2026–2030)

1) ACCELERATING RESEARCH AND INNOVATION

We’ll shorten timelines from discovery to therapies. This will happen by creating the shared infrastructure that modern science needs.

  • Shared infrastructure and connected data speed discovery
  • Rising investigators choose LAM through mentorship and multisite collaboration
  • Patient-driven research priorities with endpoints that matter in real life

2) MAXIMIZING COMPREHENSIVE CARE AND QUALITY OF LIFE

We will improve care in our global LAM clinic network. Quality of life will be a key focus.

  • Consistent clinic network with clear referral routes, updated accreditation, and centers of excellence
  • Clinician handbook and a patient-written guide
  • Patient and provider feedback drives improvement

3) ADVANCING WOMEN’S HEALTH IN RARE DISEASE

We will lead where LAM lives: at the intersection of estrogen biology, reproductive health, and women’s rare diseases.

  • Progress toward an estrogen blockade clinical trial
  • Reproductive roadmaps and tools for contraception, fertility, and menopause management
  • Coalitions and pathways with multidisciplinary experts and partners in women’s health

4) FORTIFYING THE FOUNDATION

We will build a strong foundation for the mission. This will make our work durable, accountable, and well-supported.

  • Financial resilience and diversification, donor stewardship, and establishment of an endowment
  • Strong core operations and governance, efficient systems, and succession planning
  • Volunteers and partnerships to power the strategic plan

FOCUS ON THE FUTURE: WHY NOW, WHAT CHANGES, WHAT ENDURES

What changes:

  • Clear community priorities (LAM-PREP) now guide decisions
  • Strong clinical and scientific networks are ready to scale impact
  • The rising momentum of women’s health will include LAM in the story.

What endures:

  • Urgency for new treatments → ultimately a cure
  • Whole-person care
  • No one walks alone

HOW TO PLUG IN

Patients & Families

Your voice shapes the work.

  • Share your story
  • Test our tools
  • Join a working group

Clinicians & Scientists

Your ideas and time move studies.

  • Propose studies
  • Mentor early-career investigators
  • Join multi-site collaborations

Funders & Partners

Your support compresses timelines.

  • Back the strategic goals
  • Underwrite clinical tools
  • Match gifts and partnerships
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