In the News
Since our inception in 2012, Lipodystrophy United 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.
A unique patient case inspiring research
March 17, 2026
By studying Mallory’s case, a 22-year-old film student is enabling investigators to examine the mechanisms behind lipodystrophy.
Researchers uncover why a rare disease resulting in abnormal fat loss can also lead to diabetes
February 27, 2026
Help from patients with FPLD2 reveals answers.
Rare Genetic Disorder Linked to Liver Dysfunction, Hypoglycemia, Lipodystrophy
December 09, 2025
“A rare genetic disorder discovered by UT Southwestern Medical Center researchers and their colleagues can cause brain damage from dangerously low blood sugar levels and liver damage in infants, along with variable body fat loss (lipodystrophy), fatty tumors, and metabolic complications in youth and adults.”
Pioneering Gene Therapy Research Offers New Hope for Lipodystrophy
April 2025
In this article, published on LinkedIn, The Rowett Institute discusses groundbreaking work being done in the laboratory of Dr. George D. Mcilroy. His group has made some promising discoveries in their work to develop a gene therapy for lipodystrophies.
Delayed Diagnoses and Misunderstood Symptoms: The challenge of rare disease Lipodystrophy
March 25, 2025
Andra Stratton and Sharon Halperin, of Lipodystrophy United, are interviewed about their tireless efforts to raise awareness, funding, and support for the people living with lipodystrophy worldwide.
Entos Pharmaceuticals Awarded $4 Million for its Congenital Generalized Lipodystrophy Program
February 5, 2025
The funds will support work to complete IND-enabiling studies for ENTLEP001, a genetic medicine for congenital generalized lipodystrophy (CGL).
Health Canada Approves Chiesi’s Myalepta for Lipodystrophy
February 5, 2024
The approval is for patients with confirmed congenital generalized lipodystrophy (CGL) or acquired generalized lipodystrophy (AGL). Myalepta is also for adults and children 12 years or above with familial partial lipodystrophy (FPL) or acquired partial lypodystrophy (APL).
*Note: Myalepta is only approved by the United States Food and Drug Administration (FDA) for use in patients with generalized lipodystrophy.
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