Science Driven,
Community Powered.
Every voice matters. Every story counts.
Lipodystrophy United is a patient-driven global community dedicated to improving the lives of those affected by lipodystrophy and raising awareness—our work centers on three core areas: advocacy, community, and research.
Are You Brand New to Lipodystrophy?
You’ve found the right place. We are here to help you learn about lipodystrophy and support you throughout your journey. First, we want to remind you that you are never alone.
Lipodystrophy United was co-founded in 2012 by Andra Stratton, a patient with Familial Partial Lipodystrophy (FPL).
After a 37-year-long diagnostic odyssey, Andra finally received a proper diagnosis and has since been able to find medicine and a lifestyle that provides some relief after a lifetime of searching for it.
Whether you’re a newly diagnosed patient, a parent or caregiver, or simply here for education, we have what you need. If you’re a researcher or clinician, we want to collaborate with you to advance the field of lipodystrophy for our entire global community. Together, we can focus on basic and clinical research for better outcomes for ourselves, but also for all future lipodystrophy patients worldwide.
Externally Led Patient Focused Drug Development Meeting
Lipodystrophy United will be hosting an EL-PFDD meeting involving the FDA on September 11th, 2026. We need your help preparing and participating! Whether you participate in a Voices of LU cohort or attend the meeting itself, you’ll have an impact on the lives of untold numbers of future lipodystrophy patients.
What We Do
1
Advocacy
We make your voice impossible to ignore
When pharmaceutical companies develop treatments, we’re at the table. When regulators make decisions, they hear from us. Through ongoing conversations with pharmaceutical partners, researchers, regulators, and the Global Leadership Forum, we unify international efforts and advance understanding of lipodystrophy across the globe.
2
Research
We make sure science reflects your story
Your daily experiences become scientific insights through our co-authored publications and natural history studies. We present at the world’s leading medical conferences and host symposiums where researchers don’t just study lipodystrophy, they learn from those living it.
3
Community
2k+ strong and growing every day
We facilitate meetings with patients from around the world gathered virtually for support, sharing, and solutions. United, we multiply hope.
Quick Stats
Journal Articles Published
We Reach People in 30 Countries Worldwide
Scientific and Medical Conferences Attended
Attendees Each Year at Tea with LU Support Groups
Supporting you, every step of the way
Choose Us for Impactful Change in Our Community
Tea with LU
A supportive, judgement-free virtual space where individuals affected by lipodystrophy come together to share experiences, build community, and discuss meaningful topics.
Sometimes the best medicine is a cup of tea with someone who gets it.
Lunch and Learn
An educational webinar series featuring expert speakers who break down complex scientific, medical, and health-related topics related to lipodystrophy in an accessible, engaging format.
Community Days
Nothing replaces in-person connection. Our regional gatherings bring virtual friendships into real life, creating lasting bonds and unforgettable experiences.
Scientific Symposiums
Collaborative gatherings of patients, caregivers, clinicians, and researchers to advance scientific understanding, shape research priorities, and promote patient centered care in lipodystrophy.
Educational Programs
From diagnosis day to advocacy mastery, we provide resources that grow with you and tools that help your care team understand lipodystrophy.
Our Vision
Accurate Diagnoses
Future patients will have access to specialists with a full understanding of lipodystrophy.
Quality Care
Patients will have better outcomes because of more available therapies and a well informed care team
Effective Treatment
Every type of lipodystrophy will have an effective therapy that is accessible and affordable for patients
One Day, a Cure
We work for a future without lipodystrophy
Get Involved – Join an Upcoming Event!
Lipodystrophy United has organized a calendar of activities that provide ample opportunities to get involved. Whether you’re with us at a family meeting, learning from the best at a scientific symposium, or simply celebrating World Lipodystrophy Day from home, your involvement is what keeps us going. Thank you for your support!
Trusted by Research, Guided by Experience
From published studies to real patient stories, our work is backed by science and strengthened by the voices of our community.
Publication Library
Our collection of lipodystrophy related literature
Available Treatment
Review therapeutic options from a clinician’s perspective
Clinical Trials
Review a list of lipodystrophy studies currently enrolling
Clinician's Guide
We’ve created a helpful guide to help clinicians understand and treat lipodystrophy
“I used to feel alone, then I found Lipodystrophy United and suddenly I had a team fighting with me.”
– Community member, SH
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.
Featured Resources
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…
Lipodystrophy Mental Health Toolkit
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…
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…
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…
General Nutrition for Lipodystrophy Syndromes
“I do what my doctor tells me. I follow my dietitian’s advice.But food still affects me differently.”
Hear from our supporters
Voices of impact.
Our supporters share stories
Person with Lipodystrophy
“It was so comforting to hear that so many others have the same health and mental struggles that I have.”
Scientist In Our Network
“The degree to which patient and caregiver priorities can differ from those of basic scientists and the greatly outsized impact of motivated communities was amazing to see.”
Person with Lipodystrophy
“I told my doctors I was active, they wanted me to eat more carbs. Another doctor sees my stats and tells me to have less carbs. The doctors only know the parts of you that you share, you know all of you.”
LU Event Attendee
“To sit, dozens of us, in a hotel cafeteria and sit eating, laughing, and sharing our ordeals living with various forms of lipodystrophy is a time I will never forget.”
Supporting People Living with Lipodystrophy Worldwide
We’ve been tirelessly working to raise awareness, funding, and to build relationships with the researchers and companies that are in a position to help. Over years of advocacy, we’ve made an impact on the landscape for researchers and patients alike.
Your questions answered
Get informed now.
Answers to your common questions
Frequently asked questions
Can’t find what you’re looking for? Get in touch with our team and we will gladly help out.
1. What is lipodystrophy?
Lipodystrophy is a group of rare syndromes characterized by a lack of fat tissue, which can lead to metabolic complications.
2. Where can I find more information and resources?
3. How can I get involved in the community?
4. How can I support your mission?
Your support is crucial. You can help by making a donation or by becoming a volunteer to help with our events and advocacy efforts.
5. What kind of clinical research and trials do you support?
We have built trusted relationships with the medical community to help advance research and treatments. You can find information on current and past clinical trials in our Clinical Trials section.
Our Partners in Advocacy
Support Us While You’re Out and About!
Visit our online store and purchase some Lipodystrophy United swag. All apparel is made from high quality materials and production is managed through Bonfire, a fundraising partner of Lipodystrophy United. See what’s in the store today! Is there something you’d like to see in the store? Let us know!
Fostering Unity and Collaboration with Our Sponsors
