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Lipodystrophy United
Lipodystrophy United
  • Home
  • About LU
    • About Us
    • Schedule of Events
    • Our History
    • Our Team
    • LU Symposia
    • World Lipodystrophy Day
  • What is Lipodystrophy
    • The Basics
    • Types
    • Research and News
  • Patient Corner
    • Guides to Lipodystrophy
    • Stories & Community
    • Expert Centers
    • Lectures
    • Clinical Trials
    • Rare Disease Resources
  • Get Involved
    • Donate
    • Volunteer
    • Engagement Opportunities
  • More
    • Home
    • About LU
      • About Us
      • Schedule of Events
      • Our History
      • Our Team
      • LU Symposia
      • World Lipodystrophy Day
    • What is Lipodystrophy
      • The Basics
      • Types
      • Research and News
    • Patient Corner
      • Guides to Lipodystrophy
      • Stories & Community
      • Expert Centers
      • Lectures
      • Clinical Trials
      • Rare Disease Resources
    • Get Involved
      • Donate
      • Volunteer
      • Engagement Opportunities
  • Home
  • About LU
    • About Us
    • Schedule of Events
    • Our History
    • Our Team
    • LU Symposia
    • World Lipodystrophy Day
  • What is Lipodystrophy
    • The Basics
    • Types
    • Research and News
  • Patient Corner
    • Guides to Lipodystrophy
    • Stories & Community
    • Expert Centers
    • Lectures
    • Clinical Trials
    • Rare Disease Resources
  • Get Involved
    • Donate
    • Volunteer
    • Engagement Opportunities

Lipodystrophy United

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Lipodystrophy United

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Living with Lipodystrophy: A New Global Guide

This resource was created in collaboration with Chiesi and the Global Lipodystrophy Forum

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History

Since our inception in 2012, Lipodystrophy United (LU) has made accomplishments that have helped to build a supportive community of patients, improve the understanding of the burden of living with lipodystrophy and expand awareness. LU built a unified patient community as well as trusted relationships with the medical community and other important stakeholders. This progress led to advancement in research and treatments. 

Our Mission

Our mission is to increase awareness and understanding of lipodystrophy among the patient community, medical professionals and stakeholders. Lipodystrophy United aims to be the leading resource in the United States for patients and healthcare professionals dealing with lipodystrophy, providing clear, actionable information and support for managing the condition.

    Newsletter Archive

    Lipodystrophy United’s newsletters are a vital way we connect, inform, and uplift our global community. Each edition shares the latest updates on research, events, and advocacy, while celebrating the voices and experiences of those living with lipodystrophy. From expert webinars and community-led sessions to major awareness campaigns like World Lipodystrophy Day, our newsletters highlight the strength of our community and the progress we’re making together. Whether it’s policy updates from Capitol Hill, stories of diagnosis and resilience, or calls to action and support, our newsletters serve as a trusted resource for education, inspiration, and connection. Through them, we ensure every patient, caregiver, and ally knows they are not alone—and that their voice matters in shaping the future of care, research, and awareness.

    January Newsletter (pdf)

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    Happy World Lipodystrophy Day Newsletter (pdf)

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    February Newsletter (pdf)

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    World Lipodystrophy Day Lunch and learn (pdf)

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    May Newsletter (pdf)

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    Announcement Newsletter May (pdf)

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    Contact Us

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