Patients & Families
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
Welcome to Lipodystrophy United!
Below, you’ll find everything you need to learn all about lipodystrophy. From dietary resources to full blown toolkits, we’ve got you covered so you can focus on your health while understanding everything that comes with it.
Resource Library
Empower Yourself!
Explore our collection of lipodystrophy related resources to help you navigage the journey.
Signs & Symptoms
Do I have lipodystrophy?
Here’s what to look for.
Diagnosis
These are some things to expect when seeking a lipodystrophy diagnosis.
Treatment
What treatments are available for lipodystrophy?
Lifestyle
Many patients manage symptoms with their lifestyle and diet. Learn how they do it.
Get Involved with our EL-PFDD!
We will be holding our Externally Led Patient Focussed Drug Development (EL-PFDD) Meeting on September 11-13, 2026, in Alexandria, Virginia.
Patient-Focused Drug Development (PFDD) is a process created by FDA to ensure that the voices, experiences, and priorities of patients and caregivers are meaningfully incorporated into drug development and regulatory decision-making. An EL-PFDD meeting is organized by the patient community—in this case, by Lipodystrophy United—with FDA staff attending in a listening capacity.
Hear about Lipodystrophy from our Co-Founder, Andra Stratton
Lipodystrophy Explained Video
Andra explains the effects of abnormally distributed adipose tissue and low leptin levels. With no safe fat storage, it accumulates in the bloodstream, concentrates around organs, potentially causing organ failure.
What Clinicians Need to Know About Lipodystrophy
Andra talks about the need for clinicians to work with patient organizations in disease research. Keeping the patient involved in every step of their research is vital to treating patients more successfully. Clinicians usually focus on the metabolic effects of the disease, but lipodystrophy is a multi-system disease.
Lipodystrophy is Often Misdiagnosed
Quick Clicks
Important Resources at your Fingertips
Patient Resource Brochure
Check out this concise guide to lipodystrophy. You’ll have all you need to become familiar with the diagnosis. This is an excellent resource to share with family and friends who want to learn more!
Pocket Med Videos
This video series was created in collaboration with Lipodystrophy UK.
Join Our Facebook Community
Be a part of the social media presence of Lipodystrophy United! Connect with other members of the community, meet new people, and bond over our lives with lipodystrophy.
Nutritional Guides
Many lipodystrophy patients manage symptoms by taking control of their diet and nutrition. These guides are loaded with information to help you learn how your diet impacts how you’re feeling.
A Patient’s Guide to Lipodystrophy
Pocket Med videos in collaboration with Lipodystrophy UK
Lipodystrophy on the Outside
Community members show us what lipodystrophy looks like and talk about the effect it has on their bodies.
Lipodystrophy on the Inside
Understanding what goes on inside the body is extremely useful to support self-management.
Lipodystrophy and Hormones
We hear of the different ways people respond to hormones and get a real sense of the individuality of each person’s experience.
Lipodystrophy and Self-Management
Good advice and wise words about the physical and emotional challenges that our contributors face day-to-day.
“Living with Lipodystrophy,” Facebook group
What is “Living with Lipodystrophy” Facebook Group?
“Living with Lipodystrophy” is private Facebook group with over 1,000 members that was started by a group of patients in the lipodystrophy community.
*Note: “Living with Lipodystrophy” Facebook group is not affiliated with Lipodystrophy United (LU), though LU shares resources with the group.
Impact of “Living with Lipodystrophy” Facebook Group
The group has had a significant impact on the lipodystrophy community in several important ways:
- Community Building and Support: Patient peers provide emotional support, as members can share personal experiences, coping strategies, and encouragement. Members have reported feeling less isolated and have built critical friendships in this group.
- Information Sharing: “Living with Lipodystrophy” Facebook group serves as a valuable resource for sharing information about treatments, research updates, and patient advocacy. This is particularly crucial for the lipodystrophy community where information can be scarce and not widely disseminated through traditional medical channels.
- Advocacy and Awareness: “Living with Lipodystrophy” has enabled members to organize and mobilize advocacy efforts more effectively. Members can coordinate actions to raise awareness about lipodystrophy, lobby for research funding, and influence health policy. By uniting individuals from various geographical locations, these groups amplify their voice and impact.
- Resource Pooling: Members often share practical resources, such as recommendations for specialists, advice on navigating healthcare systems, and tips on accessing financial aid or specialized equipment. This shared pool of knowledge can be invaluable for those who might otherwise struggle to find support.
How Can I Access the Facebook Group?
Click on the link below to request to join the Facebook group. You will have to request to join and one of the administrators will approve your request.
*Note: Administrators reserve the right to remove anyone that is not following community guidelines. Additionally, all posts are reviewed by administrators before approval.
Nutritional Guides for Patients & Familes
Attend Our Events
Lipodystrophy United proudly hosts multiple events throughout the year that you can attend both virtually and in-person. Building and nurturing a community involves bringing people together to unite over a shared goal. Check out our calendar of upcoming events and plan to come see us!
The Guide to Living with Lipodystrophy
This excellent resource is perfect for getting familiar with lipodystrophy. Whether you are a newly diagnosed patient, a partner, or someone close to a lipodystrophy patient, your power comes from the knowledge you hold. Get started here and we’ll be with you the whole way!
Get the Guide
Start learning today!
What You'll See
- Education
- FAQs
- Support
- Resources
Brand New Tea With LU in 2026
Sign up for your cohort now!
We’re excited to share some updates about the new structure of Tea with LU. Over the past year, we’ve listened closely to your feedback and reflected on how we can best continue building meaningful, supportive spaces for our community.
Learn from the Experts in Science & Medicine
Visit the Library
Our lecture series is meant to serve as a resource as you continue to navigate your journey with lipodystrophy. We’re always learning new things as research continues – Check back for updates and new lectures!
Today’s Featured Lectures
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.
Stories from the Community
First hand experiences with Lipodystrophy – You are NOT alone!
World Lipodystrophy Day
World Lipodystrophy Day is celebrated on March 31st each year. It marks a date that patients, caregivers, families, clinicians and researchers speak with a unified voice for the lipodystrophy community. Hit the button below to learn how you can participate and celebrate in style!
Opportunities to Participate in Research
Clinical Studies
One of our core objectives is to drive the advancement of research and the development of new therapies. As we’re working with our research partners, we frequently post new trials here on our website so you can keep up with opportunities available to you!
Featured Studies
Subscribe to our Newsletter!
Each month we put together a review of what we’ve been up to and key events from the lipodystrophy and greater rare disease communities.
Fostering Unity and Collaboration with Our Dedicated Partners
