Lipodystrophy United: Our FDA EL-PFDD Meeting + Introducing Voices of LU скачать в хорошем качестве

Lipodystrophy United: Our FDA EL-PFDD Meeting + Introducing Voices of LU

Lipodystrophy United is preparing for an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting with the FDAnand we want your voice in the room. In this video, we explain what an EL-PFDD is, why it matters, and how our new program Voices of LU will help capture real lived experience and disease burden across the lipodystrophy community. 📅 EL-PFDD date: Friday, September 11, 2026 📍 Format: Hybrid (Zoom + in-person near the FDA, likely Alexandria, VA) What you’ll learn in this video What an EL-PFDD meeting is and how it impacts drug development and treatment evaluation The kind of real-world experiences the FDA needs to hear (beyond lab numbers) What Voices of LU is, how cohorts work, and how we’ll use de-identified insights to inform the PFDD Speakers Kate Stratton, Executive Director, Lipodystrophy United Sharon Halperin, Research Director, Lipodystrophy United Francesca Amato, Operations Manager, Lipodystrophy United Get involved Visit our website and follow our social media for sign-up info and cohort updates. 🌐 Website: www.lipodystrophyunited.org ✉️ General email: info@lipodystrophyunited.org 📩 (Also mentioned in the video) Kate: kate@lipodystrophyunited.org | Sharon: sharone@lipodystrophyunited.org 📷 Instagram: @lipodystrophyunited (  / lipodystrophyunited   ) Important note This video is for educational and community purposes and is not medical advice. Always consult your healthcare team for personal medical guidance. — Lipodystrophy United Education • Research • Advocacy • Community Chapters 00:00 – Welcome + what this video covers (EL-PFDD + Voices of LU) 00:26 – Introductions (Kate, Sharon, Francesca) 01:24 – What is an EL-PFDD meeting? 04:16 – EL-PFDD logistics: Sept 11, 2026 + hybrid format 05:26 – Draft agenda: panels + community discussion 08:56 – Lipodystrophy overview + why patient voice matters 20:56 – Sharing safely and only what you’re comfortable with 21:04 – Voices of LU: cohorts, surveys, consent, de-identified data 25:13 – How to sign up + contact info 26:19 – Thank you + closing