ELITE Patient Advocate Andra Stratton of Lipodystrophy United

Andra Stratton

Co-founder & President

Lipodystrophy United

 

Giving Lipodystrophy Patients a Voice

When a serious, rare condition drains your energy and threatens your life, what do you do? For Andra Stratton, the answer was simple: Dig deeper.

Tireless, committed, and compassionate, Andra is Co-founder and President of Lipodystrophy United, the first-ever patient advocacy group for lipodystrophy—a rare, life-threatening metabolic condition. Herself a person with lipodystrophy, Andra has a deep personal understanding of the life-limiting—and energy-sapping—effects of the disease.

“I lived many years thinking something was wrong with me by not having a diagnosis,” Andra says. “The label ‘lipodystrophy’ has allowed me to seek information, demand attention, and learn to advocate for myself. There is still limited information and certainly no cure in sight. I now work with some of the most inspiring patients, doctors, and researchers around the world. I am able to answer questions and provide information with the hope that I can help make the path for every young person with lipodystrophy a bit smoother.”

Instead of overwhelming her, Andra uses her condition as a source of empathy and strength to inspire others to stand with all people and families affected by lipodystrophy.

“I cannot think of a more tireless—and brave—advocate for people with lipodystrophy than Andra,” says Shauna Horvath, Director of Planning, Cambridge BioMarketing, “Whenever we need to help our staff truly understand the challenges of living with a rare disease, Andra is there for us to communicate in a very real, very approachable way.”

Over the last two years, Andra has led efforts to increase awareness and support among patients around the world. For instance, Andra was an invited speaker at last year’s SXSW panel discussion “Rare in Common,” which focused on how digital rare disease communities are changing the dynamics of drug development, interactive technology, and global communications.

For the last decade, Andra has represented the patient voice in meetings and conferences around the world. With a background in industrial psychology, as well as her personal experiences with lipodystrophy, the community could not ask for a more informed, committed, and passionate individual to help advance the potential for better understanding and better treatment.

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