Voices of LU
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.
Overview of the Structure
Going forward, Tea with LU will transition into Voices of LU, a structured, patient-centered program designed to strenghten community support and help Lipodystrophy United capture the real voice of the patient for research, treatment development, and our upcoming Externally Led Patient-Focused Drug Development (EL-PFDD) meeting with the FDA.
Who Can Participate?
Voices of LU is open to:
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- Patients
- Caregivers
- Newly diagnosed individuals who may not yet have a comprehensive understanding of their diagnosis.
How many people participate?
There have been over 100 attendees each year at our Tea with LU support group meetups.
Your participation in Voices of LU will not only help us prepare for our Externally Led Patient Focused Drug Development Meeting with the FDA, but it will be invaluable as we prepare our Voice of the Patient Report. This report will become part of the FDA’s public record and will inform on benefit-risk assessments for therapies they evaluate. You can impact future drug approvals simply by being a part of Voices of LU! Register for your cohort today!
Kate Stratton
Executive Director, Lipodystrophy United
What’s New:
Beginning in February 2026, Voices of LU will run as two-month cohorts organized by lipodystrophy type. There will be three cohorts:
- Familial Partial Lipodystrophy (FPLD)
- Congenital Generalized LIpodystrophy (CGL)
- Acquired Types
Each cohort will meet twice per month over two months. There will be a total of four 90-minute sessions in each cohort. Keeping this structure across cohorts helps us capture consistent insights across subtypes and turn community input into a clear, organized resource.
Registration and Schedule
To help us plan and ensure each cohort is set up for success, please register for your cohort at least one week before Session 1, ideally as soon as you know you’ll be participating.
Open Session Kick-Off
January 20, 2026 (6:00 PM – 7:30 PM CST)
Register Here
FPLD Cohort
February 2nd & 24th
March 3rd & 24th
Complete the Interest Form Here
Topics:
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Session 1: Introductions, burden of the physical disease
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Session 2: The invisible burden, session summary
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Session 3: Treatments
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Session 4: Clinical trials and risk tolerance, session summary
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CGL Cohort
March 10th & 31st
April 4th & 28th
Complete the Interest Form Here
Acquired Types
May 12th & 26th
June 9th & 30th
Complete the Interest Form Here
Open Session Wrap-Up
July 7th & 21st
*Released as needed
The Purpose: What Will Voices of LU Do for Our Community?
Identify Priorities
Ensure that the priorities of our organization reflect the real experiences of our community.
Empower Patients
Build informed, confident patient advocates through shared learning and discussion
Build Our Identity
Create a cohesive, recognizable program identity that maintains trust, participation, and momentum in LU’s community engagement work.
We want to learn more about the patient and caregiver experience with a focus on five main areas
Daily Quality of Life
Mental & Physical Health
Treatment Burden
Risk Tolerance
Research Participation
Join Us to Guide the Community!
We will collect validated, real-time data under ethics committee approval. Each participant wil be asked to complete an informed consent form. All information will be recorded and analyzed in deidentified form.
Tea with LU has always been about connection, safety, and shared understanding. This updated structure helps us deepen those values and ensure that everyone feels seen, supported, and welcome.
If you have questions, reach out to us at in**@*****************ed.org or follow us on social media.
