Andra Stratton, President and co-founder of Lipodystrophy United talks about the foundation and the large increase in individuals being diagnosed with the disease, possibly as a result of the work LU has done to raise awareness of this rare condition.

Stratton said, “Lipodystrophy United was founded in 2012 by myself and a few other individuals with lipodystrophy or affected by the disease. Our mission has been to serve as the bridge between the patient community and the scientific community, and to bring awareness to both the general population as well as to physicians.”

“Like all rare diseases, lipodystrophy is not widely recognized and there’s significant amount of misdiagnosis and undiagnosed,” noted Stratton, but added that that is starting to change. “We’re discovering a much higher prevalence the U.S. than previously reported, so we’re hopeful that some new research will be released soon that that gives a better idea of the prevalence.”

“We’re getting three to four new patients coming to Lipodystrophy United a month and so the prevalence of one in a million or one in ten million is actually impossible.”

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