Lipodystrophy United

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.

Programming:

LU serves and supports the lipodystrophy community through comprehensive, multi-faceted programming that addresses both educational and psychosocial needs. We foster connection and support through weekly virtual support groups (Tea with LU), monthly live-streamed expert Q&As (Lunch with LU), in-person regional gatherings across the U.S., and major scientific and community conferences that unite patients, caregivers, clinicians, and researchers. The organization provides up-to-date disease education via its website, both closed and public social media platforms, and through online and printed educational materials, conference attendance opportunities, and public awareness campaigns. Our bi-annual conference—such as the 2024 Consensus Building Symposium, which drew over 200 participants from four continents—serves as a vital forum for collaboration, knowledge-sharing, and advancing the field.