Epidermolysis Bullosa Community Meetups

When?

Saturday, August 9, 2025

Where?

LAX Marriott
5855 W Century Blvd
Los Angeles, CA 90045

In partnership with University of Southern California (USC)

Agenda

9 AM - 9:30 AM | Registration

 

9:30 AM - 12 PM | Programming

Welcome Remarks and debra of America Updates | Brett Kopelan, debra of America Executive Director

Readthrough Therapy for Epidermolysis Bullosa | Mei Chen, PhD

AGLE-102 - Clinical Advancements in Regenerative Healing for DEB Patients | Shelley Hartman, CEO, Aegle Therapeutics

Mesenchymal Stem Cell-Derived Extracellular Vesicles for Epidermolysis Bullosa | Kathleen Miao

ZEVASKYN: A New FDA-Approved Gene Therapy for RDEB Wounds | Madhav Vasanthavada, PhD, MBA, Chief Commercial Officer, Head of Business Development, Abeona Therapeutics; featuring EB Community Member Noelle

Understanding FILSUVEZ and Its Role in Epidermolysis Bullosa (EB) | Leland Turner, PharmD, Medical Science Liaison & Athena Saunders-Hechavarria, Patient Education Liaison, Chiesi USA; featuring EB Community Member Henry

 

12 PM - 1 PM | Catered Lunch

 

1 PM – 3 PM | Programming

Experience with VYJUVEK | Bonnie Fainman, Patient Access Liaison, Krystal Biotech; featuring EB Community Member Vanessa

VYJUVEK at Home with Option Care Health | Jennifer Johnston, RN, BSN, Director, Product Management, Option Care Health

ABCB5+ Stem Cells for the Systemic Treatment of EB – An Update on the Phase III Trial | Dr. Christoph Ganss, CEO and Founder, RHEACELL

Your Cells, Our Science: Gene Therapy for Dystrophic Epidermolysis Bullosa | David Chu, MD, PhD, FAAD, Chief Medical Officer, Castle Creek Biosciences

 

3 PM – 4 PM | Social Hour

 

Featured Speaker:

Mei Chen, PhD
Professor of Dermatology
Keck School of Medicine of USC

Registration