EB Research Partnership
  • Epidermolysis Bullosa
    • What is EB?
    • Life with EB
    • Resources
  • Research
    • Our Impact
    • Scientific Advisory Board
    • Clinical Trials
    • Community Council
    • Apply for a Grant
  • Get Involved
    • Donate
    • Sponsor
    • EB Active
    • Events >
      • Venture Into Cures
    • The Effect
    • Shop
    • Accelerator Fund
  • Media
    • Press
    • Videos
  • About Us
    • Our Mission
    • Financials
    • Venture Philanthropy
    • Supporter Spotlight
    • Leadership >
      • Board of Directors
      • Staff
      • Founders
  • Donate

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. 

recent #communityCouncil Webinars

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

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

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

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

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

Sponsors

Picture

EB Research Partnership

244 Madison Ave Ste 104
New York, NY 10016 
info@ebresearch.org
646-844-0902
Careers

Contact Us
​

Donor Privacy Policy
Donate

​Our Mission

​
Shop

Press
Picture

COPYRIGHT @2022 EB RESEARCH PARTNERSHIP. ALL RIGHTS RESERVED. EB RESEARCH PARTNERSHIP IS A 501(C)(3) NON PROFIT.

  • Epidermolysis Bullosa
    • What is EB?
    • Life with EB
    • Resources
  • Research
    • Our Impact
    • Scientific Advisory Board
    • Clinical Trials
    • Community Council
    • Apply for a Grant
  • Get Involved
    • Donate
    • Sponsor
    • EB Active
    • Events >
      • Venture Into Cures
    • The Effect
    • Shop
    • Accelerator Fund
  • Media
    • Press
    • Videos
  • About Us
    • Our Mission
    • Financials
    • Venture Philanthropy
    • Supporter Spotlight
    • Leadership >
      • Board of Directors
      • Staff
      • Founders
  • Donate