Research In Action: Advancing Care for Epidermolysis Bullosa

Educational Programs

Genetic Skin Disorders

2026

Research in Action: Advancing Care for Epidermolysis Bullosa (EB) is a new virtual education series chaired by Irene Lara-Corrales, MD, of the University of Toronto, and Marissa Perman, MD, of the University of Pennsylvania. Designed to highlight the latest advances in EB research, diagnosis, treatment, and multidisciplinary care, the series features a keynote webinar alongside a collection of expert-led webinars and podcast episodes. Bringing together clinicians, researchers, patients, caregivers, advocates, and industry partners, the program aims to explore the evolving EB landscape, foster meaningful dialogue, and identify opportunities for collaboration that can improve outcomes for individuals living with EB.

Special thanks to BioMendics, Castle Creek Biosciences, Chiesi, and Krystal Biotech for their support of the 2026 EB Educational Series. PeDRA is solely responsible for all program content and the selection of all presenters, authors, moderators, and faculty.

Part One: The Evolving Research Landscape in Epidermolysis Bullosa

In the first installment of PeDRA’s 2026 educational series – Research in Action: Advancing Care for Epidermolysis Bullosa (EB), Dr. Peter Marinkovich of Stanford University provides a timely overview of emerging therapies and clinical research in EB, including gene therapies, cell-based approaches, inflammation-targeted treatments, and strategies to improve wound care and long-term outcomes. Dr. Marinkovich includes an excerpt from Aaron Owens, a dystrophic EB patient who participated in a clinical trial. Designed for clinicians, researchers, patients, caregivers, and others involved in EB care, this program highlights recent progress in the field and the collaborative work driving better treatment options for patients.

Part Two: Bonus Episode: Hope on the Horizon

In honor of EB Awareness Week, we’re sharing the second episode of our Research In Action: Advancing Care for Epidermolysis Bullosa series. Jean Tang, MD, PhD, joins Marissa Perman, MD, and Irene Lara-Corrales, MD, MSc, to discuss the rapidly evolving treatment and research landscape for epidermolysis bullosa (EB). Together, they explore newly approved therapies, emerging approaches like gene therapy and CRISPR, the realities of clinical trial participation, and the ongoing challenges of access and daily care. The conversation balances practical guidance, scientific progress, and hope for the future of EB treatment.

Part Three: Understanding EB Clinical Trials – A Family and Clinician Perspective

In this episode, clinicians and a parent advocate explore what EB research and clinical trials mean for patients and families. Pediatric dermatologist Lara Wine Lee, MD, PhD, and Deana Calhoun, whose daughter Cooper lives with recessive dystrophic epidermolysis bullosa (RDEB), discuss the research pipeline, treatment studies, placebo-controlled trials, eligibility, informed consent and assent, and the practical realities of participation. Their conversation highlights the importance of clear communication, patient-centered trial design, and including children and families in decisions about research and care.

Interested in joining our studio audience for future episodes? Email Jenn Dawson, PeDRA’s Director of Educational Programs, to learn more.

For a complete list of speaker disclosures, please click on the speaker photos.

Program Speakers

Peter Marinkovich, MD

Professor of Dermatology in the Department of Dermatology at Stanford University School of Medicine

Relevant Disclosures:

Dr. Marinkovich has worked as a paid investigator performing blistering disease research for the following companies:

Abeona Therapeutics
Castle Creek Biosciences
Krystal Biotech
Phoenix tissue repair
Argenx
Cabaletta Biosciences

Jean Tang, MD, PhD

Professor of Dermatology | Stanford University

Disclosures:

Co-founder: PellePharm
Consultant: BridgeBio, Sol-gel
Co-Inventor of EB-101/Pz-cel (Abeona Therapeutics

Lara Wine Lee, MD, PhD

Professor of Dermatology | Medical University of South Carolina

Disclosures:

Chiesi – research funding, speaking, consulting/ad board

Krytsal – speaking, consulting

Abeona – ad board

Twi Biosciences – research funding

Paradigm- research funding

Castle Creek – fees

Deana Calhoun

Mother and Caregiver to a Child with RDEB

Program Co-Chairs

Irene Lara-Corrales, MD

Program Co-Chair

Relevant Disclosures:

Receipt of grants/research support: EB Medical Research Foundation, EB Research Partnership, Rheacell, Canfield, Pediatric Dermatology Research Alliance (PeDRA), Paradigm, DeBRA Research

Receipt of honoraria or consultation fees: Abeona, Chiesi, CSA BioTech

Participation in company-sponsored speaker’s bureau: Chiesi

Other support: Board member, DeBRA Canada