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. 

webinar tonight

Please join us for our webinar today at 7PM EST / 4PM PST called "What You Need to Know to Participate in the DeFi-RDEB Clinical Study" presented by Anna Bruckner, MD, MSCS and M. Peter Marinkovich, MD. 

​Click here to join: https://zoom.us/j/98023495492

june 2020 #communitycouncil

Hear what's new with EBRP, get updates on Phoenix Tissue Repair's Phase 1/2 Clinical Trial, and learn to reduce your stress and build resilience in this information-packed webinar! Click here for a list of resources listed in the "Reducing Stress and Building Resilience" presentation.

other RECENT Presentations

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Caregiver Role Strain | Monday, October 28, 2019 at 3pm PDT
Presented by: Dr. Anne Lynch Jordan, PhD and Andy Helgeson, BSN, RN

WATCH RECORDING

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Clinical Trials Update | Wednesday, October 30, 2019 at 3pm PDT
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