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Lipodystrophy United
Lipodystrophy United
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    • Home
    • About LU
      • About Us
      • Schedule of Events
      • Our History
      • Our Team
      • LU Symposia
      • EL-PFDD
      • World Lipodystrophy Day
    • What is Lipodystrophy
      • The Basics
      • Types
      • Research and News
    • Patient Corner
      • Nutrition
      • Guides to Lipodystrophy
      • Stories & Community
      • Expert Centers
      • Lectures
      • Clinical Trials
      • Rare Disease Resources
    • Get Involved
      • Volunteer
      • Donate
      • Giving Tuesday
      • Join our Board
      • Engagement Opportunities
  • Home
  • About LU
    • About Us
    • Schedule of Events
    • Our History
    • Our Team
    • LU Symposia
    • EL-PFDD
    • World Lipodystrophy Day
  • What is Lipodystrophy
    • The Basics
    • Types
    • Research and News
  • Patient Corner
    • Nutrition
    • Guides to Lipodystrophy
    • Stories & Community
    • Expert Centers
    • Lectures
    • Clinical Trials
    • Rare Disease Resources
  • Get Involved
    • Volunteer
    • Donate
    • Giving Tuesday
    • Join our Board
    • Engagement Opportunities

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What is An EL-PFDD?

Lipodystrophy United - Working with the FDA

We are thrilled to share an exciting milestone: Lipodystrophy United has been awarded the opportunity to host an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting with the U.S. Food and Drug Administration (FDA).


Patient-Focused Drug Development (PFDD) is a process created by FDA to ensure that the voices, experiences, and priorities of patients and caregivers are meaningfully incorporated into drug development and regulatory decision-making. An EL-PFDD meeting is organized by the patient community—in this case, by Lipodystrophy United—with FDA staff attending in a listening capacity.

At this meeting, patients and caregivers will have the chance to speak directly about the daily impact of lipodystrophy, the symptoms that matter most, and what an ideal treatment would look like. The majority of the meeting will follow a town-hall style discussion led by patients, so that the broadest range of lived experiences are captured.



Our Values

Patient-centered

Patient-centered

Patient-centered

Our PFDD gives patients the microphone.

Inclusivity

Patient-centered

Patient-centered

All types of lipodystrophy will be represented

Equitable access

Patient-centered

Equitable access

Every person deserves to attend, regardless of cost

Community-driven

Proven leadership

Equitable access

We’ve always built bridges between patients, caregivers, researchers, and clinicians

Proven leadership

Proven leadership

Proven leadership

LU is the only patient-led lipodystrophy organization with a track record of advocacy, education, and research impact

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EIN: 46-1165699


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