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

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

Download PDF

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. Due to lack of capacity, the foundation was less active from 2019 - 2023. 


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.

Our Future

Our absence proved the great need in the community for full-time advocacy and the voice of the patient, present in decisions that impact patient lives. Our voices matter from diagnosis to research and regulatory processes. It is now in the hands of our Lipodystrophy community to regrow our impact. We need you to get involved! 

    Newsletters

    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)

    Download

    Happy World Lipodystrophy Day Newsletter (pdf)

    Download

    February Newsletter (pdf)

    Download

    World Lipodystrophy Day Lunch and learn (pdf)

    Download

    Contact Us

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    Join Lipodystrophy United in Making a Difference

    Please check back often—our website is currently being rebuilt to better serve the lipodystrophy community.


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    EIN: 46-1165699


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