Resources
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.
Support & Educational Events
Connecting Our Community Through Shared Experiences
Tea with LU
Tea with LU is a free virtual support group by Lipodystrophy United, held on Zoom the first Tuesday of each month. It provides a welcoming space for people with lipodystrophy, caregivers, and loved ones to share experiences, discuss challenges, and gain support on topics like daily life, mental health, advocacy, and medical insights.
Tea with LU – Special Sessions
Tea with LU special sessions are community-led Zoom gatherings held every third Thursday. Hosted by Lipodystrophy United, they focus on themed discussions, workshops, and guest speakers covering topics like mental health, nutrition, and chronic conditions. These inclusive sessions provide safe spaces for patients and caregivers to connect, learn, and share experiences.
Lunch & Learns
Virtual, Zoom, one Saturday a month. Lunch and Learn is Saturday Zoom with scientists discussing recent scientific discoveries and answering community questions regarding lipodystrophy and the comorbidities that come along with it. These sessions are recorded and uploaded for future education and those who could not attend.
Attend an Event in Person!
Community Days: Where strangers become family
Nothing replaces in-person connection. Our regional gatherings bring virtual friendships into real life, creating lasting bonds and unforgettable experiences.
Scientific Symposiums: Partnering for progress
Collaborative gatherings of patients, caregivers, clinicians, and researchers to advance scientific understanding, shape research priorities, and promote patient-centered care in lipodystrophy.
Additional Resources
Explore trusted information, tools, and support designed to help you navigate life with lipodystrophy.
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…
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.”
Lipodystrophy Mental Health Toolkit
Lipodystrophy on the Outside
Our contributors 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 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.
Lipodystrophy: good advice and contacts
Good advice and contacts, Tips, encouragement and positive thinking for living your best life with lipodystrophy.
Facebook Group
“Living with Lipodystrophy” is a private Facebook group with 1,000+ members, offering support, shared experiences, and vital resources. While not affiliated with Lipodystrophy United, it has become a…