COMMUNITY COUNCIL

The Community Council helps drive research efforts by educating the EB community with reliable and up-to-date information from trusted specialists in the EB space. Throughout the year, EBRP hosts discussions on topics like current research, clinical trials, understanding EB, and more. All sessions are publicly available and archived on this page. 

Sponsors

recent #communityCouncil Webinars

Watch this webinar on gene therapy for EB and ongoing clinical trials with Abeona Therapeutics, Castle Creek Biosciences, and Wings Therapeutics.

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Watch the video below to learn about Abeona's VIITAL Phase 3 Clinical Trial and EB Wound Care Tips.

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Watch "What You Need to Know to Participate in the DeFi-RDEB Clinical Study" presented by Anna Bruckner, MD, MSCS and M. Peter Marinkovich, MD to learn about Castle Creek Biosciences' DeFi-RDEB Study, a Phase 3 Clinical Trial for treatment of Recessive Dystrophic EB.

other RECENT Presentations

EBRP Update, Chat with Phoenix Tissue Repair, & Mental Health​ Practices | June 9, 2020
Presented by: Michael Hund, MBA, Sanuj Ravindran, MD, Mark de Souza, PhD, Robin Newman, MSW

WATCH RECORDING

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Caregiver Role Strain | October 28, 2019
Presented by: Dr. Anne Lynch Jordan, PhD and Andy Helgeson, BSN, RN

WATCH RECORDING

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Clinical Trials Update | October 30, 2019
Presented by: Dr. Emily Gorell, DO, MS, Dr. Albert Chiou, MD, MBA, John Maslowski, Dr. Peter Marinkovich, MD, Suma Krishnan, Dr. Amy Paller, MD, Janet Boylan

WATCH RECORDING

Archived Presentations

Clinical Trials Updates

For Patients & Caregivers

For EB Researchers