Researchers & Clinicians
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.
Resources
Events
Clinical Trials
We Are Your Partners in Research
Since our beginnings, Lipodystrophy United has worked tirelessly to raise awareness and funds to support research and new therapy development. We believe that building long-lasting and productive relationships with our clinical teams and researchers is a critical piece of improving outcomes for future lipodystrophy patients.
A Clinician’s Guide to Lipodystrophy
This guide is a worthwhile step toward becoming more familiar with lipodystrophy. Whether you’ve seen lipodystrophy patients for your whole career, or you’re just learning more about the condition now, you have an important part to play in our lives! Download this guide to become familiar with the obvious and non-obvious symptoms of lipodystrophy, current standards for clinical management, and the key components that go into an accurate lipodystrophy diagnosis.
Get the Guide
Start learning today!
Our Research Director
“As a medical professional with lipodystrophy, I thought I could help LU more than they could help me”. . . “they’ve helped me more than I could ever imagine.”
-Dr. Sharon Halperin
Helpful Resources for Your Patients
Guide to Lipodystrophy
This guide is here to help you get an understanding of lipodystrophy and what to expect Take your time going through it—there is no rush.. Remember, this is just the beginning, and you have got a…
Lipodystrophy in 90 Seconds
Founder of Lipodystrophy United shares a brief description of Lipodystrophy. There are many types of lipodystrophy and a wide spectrum of severity but all types share a lack of adipose tissue in some…
Generalized Lipodystrophy Resource
This site introduces generalized lipodystrophy (GL), a rare condition marked by loss of body fat, leptin deficiency, and serious metabolic complications. It explains congenital and acquired types…
General Nutrition for Lipodystrophy Syndromes
“I do what my doctor tells me. I follow my dietitian’s advice.But food still affects me differently.”
Lipodystrophy Mental Health Toolkit
What is Lipodystrophy?
Ethan, Patricia, Peter, Clare, Lucy, Daniel, Ian, Louis, Tracey and Gemma help us understand the different types of lipodystrophy. They share their expertise at an event organised by Siobhan Dunn for…
Catch Up on the State of Research
Visit Our Publication Library
Our research team, led by Dr. Sharon Halperin, is always keeping updated on newly published work in the lipodystrophy space. Review our curated list of publications here to understand the academic consensus around lipodystrophies.
Featured Publications
Stories from the Community
First hand experiences with lipodystrophy. In rare disease research, people living with a rare diagnosis are the experts in their condition. Take time to review stories from our community – your work has an impact!
Our Resources
We’ve curated a collection of helpful articles, videos, and toolkits that will help you and your loved ones understand lipodystrophy, how to navigate life with the condition, and what opportunities there are to participate in a trial or survey. Our Resource Library can be filtered by category so you can easily find what you need.
Supporting Ongoing Clinical Studies
Driving Progress
One of our core objectives is to drive the advancement of research and the development of new therapies. Here, we provide an index of clinical trials focused on lipodystrophy. Take a moment to review available research opportunities for your patients!
Featured Studies
Subscribe to our Newsletter!
We want to be an active partner. Subscribe to our monthly newsletter to receive updates on our programming, fundraising, and our ever-growing list of collaborative research projects.
Fostering Unity and Collaboration with Our Sponsors
