Epidermolysis Bullosa Community Meetups

When?

Saturday, August 2, 2025

Where?

Cincinnati Children's
3333 Burnet Ave
Cincinnati, OH 45229

 

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

Eye Care in EB | Eniolami Dosumnu, MD

Dental Care in EB | Patrick Ruck, DDS & Bobby Thikkurissy, DDS, MS, MA

Treatment of Hand Contracture/Fibrosis in EB | Roger Cornwall, MD & Carrie Shotwell, Med, DHS, OTR/L

Repurposed Drugs in EB Care | Kalyani Marathe, MD, MPH

Genetics of EB | Sarah Crawford, Genetic Counselor

Concurrent Breakout Sessions:

Expert Panel: Pain Management in Children with EB | Anne Lynch-Jordan, PhD & Kenneth Goldschneider, MD, FAAP

Patient Panel: Sexuality and Childbearing in EB

 

12 PM - 1 PM | Catered Lunch

 

1 PM – 3:30 PM | Programming

Experience with VYJUVEK | Ashley Reeves, Senior Patient Access Liaison, Krystal Biotech; featuring EB Community Member Chelsea

ZEVASKYN: A New FDA-Approved Gene Therapy for RDEB Wounds | Sarah Abdelwahab, MD, MBA, Executive Medical Director, Head of Clinical Development, Abeona Therapeutics; featuring EB Community Member Lara

Understanding FILSUVEZ and Its Role in Epidermolysis Bullosa (EB) | Jill Boyett, PharmD, CPh, Medical Science Liaison, Chiesi USA

Your Cells, Our Science: Gene Therapy for Dystrophic Epidermolysis Bullosa | Robin Blumenthal, PhD, Assoc. VP, Clinical Operations, Castle Creek Biosciences

ABCB5+ Stem Cells for the Systemic Treatment of EB – An Update on the Phase III Trial | Dr. Cristina Daniele, Lead Clinical Project Manager, RHEACELL

TAMES-02 Clinical Trial for EB Simplex | Karen McGuire, PhD, CEO and Founder, BioMendics

 

3:30 PM – 4:30 PM | Social Hour

 

Featured Speaker:

Kalyani Marathe, MD, MPH
Division Director, Division of Dermatology
Associate Professor, UC Department of Pediatrics
UC Department of Dermatology

Featured Speaker:

Lisa Remer, MD
Attending Physician, Division of Hospital Medicine
Assistant Professor, UC Department of Pediatrics

Featured Speaker:

Beth Moeves, APRN-CNP
Advanced Practice Registered Nurse, Epidermolysis Bullosa Center
Cincinnati Children's

Featured Speaker:

Nichole Halliburton, MSN, APRN-CNP
Advanced Practice Registered Nurse, Division of Dermatology, Epidermolysis Bullosa Center
Cincinnati Children's

Registration