Lipodystrophy United Mission Statement

Lipodystrophy United (LU) is an organization of committed individuals living strong with Lipodystrophy (LD). Our mission is to provide an interactive community, facilitating support and education for anyone affected by this rare disease. We serve as a resource and to increase awareness in the general population as well as the medical and insurance communities. We advocate and act as a catalyst for new patient diagnosis by assisting healthcare professionals in the understanding of Lipodystrophy trends, physical attributes and clinical symptoms in order to aid in the advancement of knowledge, treatment and future research.

Lipodystrophy Patient Stories

Every patient with Lipodystrophy has had their own unique journey and story to tell. Here you have a chance to read first-hand what patients have faced, overcome, and are striving to become. You will read the truth behind the struggles and accomplishments that real patients face every day. From bullying to learning to love yourself, these stories get real. Learn more about our patients here.

A Selective Loss of Body Fat Disorder
Lipodystrophy Community

Rare Is Everywhere!

  • Lipodystrophy is one of 7,000+ rare diseases in the U.S. identified by the National Institutes of Health.
  • Rare diseases affect 1 in 10 people in the U.S., that's 30 million people
  • 95% of rare diseases have no FDA approved treatment
  • About 50% of rare diseases do not have a disease-specific organization researching or supporting the condition.



Knowledge is power, so make sure to check out our resources to learn as much as you can regarding the many types of Lipodystrophy.

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Lipodystrophy Patient Stories

Learn about patients and their journeys and share your experience with others, helping cultivate an awareness and understanding of Lipodystrophy.

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