Featured Program, Voices of LU our Community Safe Space

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Voices of LU is Lipodystrophy United’s structured, patient-centered community engagement program designed to elevate lived experience, capture the true burden of disease, and prepare our community for meaningful participation in research, treatment development, and regulatory decision-making, including our upcoming EL-PFDD meeting with the FDA.

We have laid the groundwork with our program “Tea with LU” by creating strong community connections and shared understanding across our experiences, weaving a web of our collective voices. We now introduce “Voices of LU” with a more intentional, inclusive, and scientifically aligned structure, one that preserves emotional safety while strengthening consistency, participation, and impact.

Voices of LU exists to:

• Deeply understand the full spectrum of the burden of lipodystrophy across all subtypes
• Capture how patients and caregivers experience:
  • Daily quality of life
  • Mental and physical health
  • Treatment burden
  • Risk tolerance
  • Clinical trial participation barriers
• Ensure that the priorities of our organization reflect the real experiences of our community
• Build informed, confident patient advocates through shared learning and discussion
• Create a cohesive, recognizable program identity that maintains trust, participation, and momentum in LU’s community engagement work.

Collaborative gatherings of patients, caregivers, clinicians, and researchers to advance scientific understanding, shape research priorities, and promote patient-centered care in lipodystrophy.

An educational webinar series featuring expert speakers who break down complex scientific, medical, and health-related topics related to lipodystrophy in an accessible, engaging format.

Nothing replaces in-person connection. Our regional gatherings bring virtual friendships into real life, creating lasting bonds and unforgettable experiences.

From diagnosis day to advocacy mastery, we provide resources that grow with you and tools that help your care team understand lipodystrophy.