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Lipodystrophy United
Lipodystrophy United
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    • Home
    • About LU
      • About Us
      • World Lipodystrophy Day
      • LU Symposia
      • Schedule of Events
      • Our History
      • Our Team
    • What is Lipodystrophy
      • The Basics
      • Types
      • Research and News
    • Patient Corner
      • Guides to Lipodystrophy
      • Stories & Community
      • Expert Centers
      • Lunch and Learn
      • Clinical Trials
      • Rare Disease Resources
    • Get Involved
      • Donate
      • Volunteer
      • Engagement Opportunities
  • Home
  • About LU
    • About Us
    • World Lipodystrophy Day
    • LU Symposia
    • Schedule of Events
    • Our History
    • Our Team
  • What is Lipodystrophy
    • The Basics
    • Types
    • Research and News
  • Patient Corner
    • Guides to Lipodystrophy
    • Stories & Community
    • Expert Centers
    • Lunch and Learn
    • Clinical Trials
    • Rare Disease Resources
  • Get Involved
    • Donate
    • Volunteer
    • Engagement Opportunities

World Lipodystrophy Day Virtual Symposium

Building Bridges and Solving the Puzzle

Register to attend

Join us for a global virtual gathering dedicated to fostering wellness, sharing knowledge, and connecting the lipodystrophy community worldwide. This special event features expert presentations, personal stories, and a global panel discussion designed to provide updates on research, treatment, and community initiatives

Register to Attend Virtually

2024 Symposium Report

Download PDF

Final Schedule

Download PDF

Why Should I apply?

Build Connections

Attendees include 20+ clinicians, 20+ researchers, 40+ patients and caregivers.  This is a unique opportunity to meet others going through the same things and to meet the very people who are working hard to improve the lives of people living with lipodystrophy. 

Learn More about Lipodystrophy from the Experts

The University of Michigan is a recognized Center of Excellence. Dr. Elif Oral's team, along with other leading researchers and clinicians, will be present to engage with attendees, answer questions, and share insights through their talks.


Shape Future Research and Care

The symposium will gather input directly from patients and their families, ensuring their voices are heard in shaping future lipodystrophy research priorities. This is a unique opportunity to contribute to a patient-centered approach in medical research.

Advocacy and Storytelling

People in our community will participate in advocacy training and storytelling workshops, empowering them to share their experiences in ways that raise awareness and foster understanding of lipodystrophy.

OUr Objectives and Approach

Symposium Objectives

  1. A comprehensive approach to defining lipodystrophy including the burden of the disease
  2. Determine research gaps and priorities


The voices of our community are absolutely essential in following through with those objectives because patients, family members, and caregivers provide unique insights into how daily lives and well-being are affected by lipodystrophy. 


Approach: The Delphi Method

We will be utilizing the Delphi method to reach a consensus on our objectives. This process involves gathering input from a group of experts and stakeholders, sharing their opinions and insights, and refining the responses through multiple rounds of feedback. By iteratively sharing outcomes, the group works towards a well-informed and collective agreement. 

Frequently Asked Questions

Please reach us at info@lipodystrophyunited.org if you cannot find an answer to your question.

We only have 50 slots, but we want to make sure those slots are filled by people who really want to be involved in scientific initiatives and have been officially diagnosed with lipodystrophy. Deadline to apply is Friday, September 27th. 


It is highly recommended that you attend the first portion of the symposium to build community. However, you may attend just the consensus building portion of the Symposium, which is taking place from Friday, November 8th through Sunday, November 10th. You must arrive by 5PM to make the keynote dinner on Friday. Exceptions will be reviewed on a case by case basis and priority will be given to applicants who attend the entire Symposium. 


We understand that this is a time and financial commitment, and we are doing our best to provide a scholarship program. Please know that we are doing everything we can to make the Symposium as accessible as possible for all who wish to attend. Please apply regardless, and we will know more about our scholarship program soon. 


Due to our commitment to the community, we are not charging to register and attend the Symposium. 


Once we let you know if you have been accepted, we will provide accommodation information and how you can reserve your room with the group rate. 


The agenda at a glance is above and there is a downloadable pdf at the bottom of this page that is more comprehensive. Note that the agenda information is still being refined and nothing is final, but the draft agenda should give you a general idea. 


If you have questions, contact info@lipodystrophyunited.org and we will get back to you within 2-3 business days. Also, know that we will be updating this page frequently as we know more about the conference. 


Download the full draft agenda

Lipodystrophy 2024- Solving the Puzzle of Lipodystrophy.docx (pdf)Download

Copyright © 2024 Lipodystrophy United - All Rights Reserved.

EIN: 46-1165699


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