Lipodystrophy United Is Back! Please frequently visit our website to see updates!
Lipodystrophy United Is Back! Please frequently visit our website to see updates!
This resource was created in collaboration with Chiesi and the Global Lipodystrophy Forum
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 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.
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.
Email: info@lipodystrophyunited.org
Please check back often—our website is currently being rebuilt to better serve the lipodystrophy community.
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