A Historic Moment.
An Opportunity to Be Heard.
We invite you to watch our EL-PFDD meeting.
Lipodystrophy United hosted a historic Externally-Led Patient-Focused Drug Development meeting with the U.S. FDA, researchers, clinicians, and industry leaders.
This meeting is your chance to help decision-makers understand what living with lipodystrophy is really like. Audience participation is a major part of the day. Patients and caregivers online or in the room will have opportunities to share comments, respond to questions, and add their experiences to the conversation.
Your story matters, and we need you there in person to help make sure the full reality of lipodystrophy is heard.
Watch our EL-PFDD
Find our full Externally-Led Patient-Focused Drug Development meeting recording here. The video is broken down into segments for an easier watching experience.
Audio and caption translations are available in Spanish, French, Portuguese, Italian, and German
Take Our EL-PFDD Survey
Your experience matters. If you are a person living with lipodystrophy or a caregiver, please take our EL-PFDD survey to help us better understand the symptoms, daily challenges, treatment burden, and priorities that matter most to our community.
Your responses will help ensure that the EL-PFDD reflects a broad range of patient and caregiver experiences and gives decision-makers a clearer picture of what it is really like to live with lipodystrophy.
Take the survey and help make your voice part of the conversation.
Submit a comment!
Whether you can attend in person or not, please leave a comment below so we can include it in the Voice of the Patient Report. Your comment will help the report more accurately reflect our community and its burdens. Help us create a lasting impact on treatment.
Explore Our Poster Gallery
Displayed in front of our meeting room, explore the posters of your fellow community members! This gallery aims to show the FDA the lipodystrophy spectrum. Thank you to our wonderful community members who allowed us to share these posters at our meeting!
Patient Quotes
Read some of the testimonies from our Voices of LU study and the University of Michigan’s PRO Study!
Patient Story Book
Read some of our community stories! We are honored to share the stories and experiences of people living with lipodystrophy and their caregivers. Each person featured here has generously chosen to share a deeply personal part of their life to help others better understand the realities of this disease. We are incredibly grateful for their courage, trust, and willingness to use their voices to educate, advocate, and help shape a better future for the lipodystrophy community.
What is an EL-PFDD Meeting?
Externally led patient-focused drug development (EL-PFDD) meetings bring together patients, caregivers, USA Food and Drug Administration (FDA) representatives, industry partners, doctors, and researchers to discuss the lived experiences of a particular disease and its daily effects. For the lipodystrophy EL-PFDD, the goal is to hear from patients and caregivers about what it is like to live with lipodystrophy, so the FDA and industry partners can better understand the patient experience. This input is used by the FDA to make informed, patient-centered decisions on approvals for potential treatments for lipodystrophy. Pharmaceutical companies can use patient feedback when producing new treatment options for lipodystrophy or designing clinical trials that are meaningful to patients.
The meeting consists of hearing from clinicians, an FDA representative, two patient and caregiver panels, and extensive audience discussion sessions. The broader discussion topics of living with lipodystrophy will be:`
- Daily Impact
- Symptoms That Matter Most
- Ideal Treatments and Trade-offs
- Gaps in Diagnosis and Care
Download Your Guides and Agenda
EL-PFDD and Symposium Agenda
Download the agenda here to see what we have in store!
Travel Guide
Check out our travel guide to help you get to the event comfortably and safely.
Storytelling Workbook
As a guide, we have put together this resource to help you prepare for the meeting.
Day-Of Guide
Find parking, food, and virtual information in our everything-you-need-to-know day-of guide.
Why This Matters.
The EL-PFDD meeting is a unique opportunity to speak directly to FDA and pharmaceutical representatives about:
– What it’s like to live with lipodystrophy on a daily basis
– What a meaningful treatment would look like
– Types of clinical trials you would be willing to participate in
– What matters most to you regarding lipodystrophy
Your input will be used to guide future research, treatment, and care for those living with lipodystrophy.
Community Symposium
September 12-13, 2026
The day following the PFDD, Lipodystrophy United will host a two-day Community and Scientific Symposium at the same venue:
1900 Diagonal Rd
Alexandria, VA 22314.
Sessions begin at 10:00 AM ET each day. The evening of September 12 will feature a Gala dinner.
Four Ways to Contribute.
Register
Reserve your spot for the in-person meeting in Alexandria, VA – or join virtually from anywhere.
Submit a Comment
Share your written comments to help inform the Voice of the Patient report.
Pre-Meeting Survey
Take a short survey to help shape the agenda and ensure the topics that matter most are heard.
Donate
Support Lipodystrophy United and the work of bringing patient voices to the federal record.
Frequently Asked Questions
What is an EL-PFDD Meeting?
An EL-PFDD meeting is an Externally-Led Patient-Focused Drug Development meeting. It is a patient-centered forum where people living with lipodystrophy, along with family members and caregivers, share their experiences so the community's needs, burdens, and treatment priorities are clearly understood.
Why is Lipodystrophy United holding this meeting?
Lipodystrophy United is holding this meeting to make sure the lived experience of people affected by lipodystrophy is heard directly by the FDA, researchers, and drug developers. The goal is to highlight the symptoms, complications, treatment burden, and unmet needs that matter most to the community.
Who should attend?
People living with lipodystrophy, caregivers, family members, clinicians, researchers, advocates and all stakeholders are encouraged to attend. Anyone who wants to better understand the real-world impact of lipodystrophy is welcome.
Is the meeting free?
Yes. The meeting is intended to be accessible to the whole community and is free to attend.
Is virtual participation possible?
Yes. Lipodystrophy United has indicated that participation may be available both in person and virtually, so people can join in the way that works best for them.
Will this meeting be recorded?
Yes. The meeting will be recorded and published on the Lipodystrophy United website so community members who cannot attend live can still view the discussions later.
Can family members and caregivers participate?
Yes, absolutely. Family members and caregivers are an important part of the conversation because they often help manage daily care and can speak to the practical impact of lipodystrophy on family life.
Can people outside the United States participate?
Yes, especially because virtual participation is available. Lipodystrophy is a global community, and international perspectives are valuable.
How can I share my story if I cannot attend live?
If you cannot attend live, you may still be able to share your story or any other written comment here.
Can I submit comments before or after the meeting?
Yes. You will be able to comment before and after the meeting.
What happens after the meeting?
After the meeting, the community input will be summarized in a Voice of the Patient report and used to inform future research, drug development, and regulatory conversations. For Lipodystrophy United, this meeting is part of a broader effort to strengthen advocacy, education, and support for the lipodystrophy community.
Thank you to our sponsors!
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 treatmenst are available for lipodystrophy?
Lifestyle
Many patients manage symptoms with their lifestyle and diet. Learn how they do it.