Debra was organized more than 25 years ago to help patients and their families. Its activities include:

• Promoting and supporting extensive scientific research to achieve a cure for EB.
  
• Assisting, supporting and guiding families in the physical and emotional treatment of individuals with EB. Debra's programs include the daily services of an experienced Nurse/Educator, a national physician referral service, a network of regional support groups and an information filled website.
  
• Representing families and patients to the public and government institutions.

• Mary Sprague, Executive Director


• Alecia Baker, Business Manager


• Pennie Cannon, Project Manager


• Ro-Ann Rabanillo, Development Assistant


• Maxine Silent, Development Manager

• Faith Daniels, President, New York, NY


• Warren T. Buhle, Esq., Vice President, New York, NY


• Charlee M. Miller, Treasurer, New York, NY


• Richard Gallagher, Jr., Secretary, Gurnee, IL


• Alan R. Shalita, M.D., Chairman SAB, Brooklyn, NY


• Kathleen Brown, Westport, CT


• Angela Christiano, Ph.D., New York, NY


• Gregg Cuvin, New York, NY


• Tom Gillespie, Newtown, PA


• Jeanne Humphrey, San Francisco, CA


• Frank Kacmarsky, Anthern, AZ


• Brett Kopelan, New York, NY


• Robert Meirowitz, M.D., West Windsor, NJ


• Laurence Miller, M.D., Potomac, MD


• Thomas M. Misisco, Greenwich, CT


• Paul Nunnari, Eagleville, PA


• Leslie Rader, Louisville, KY


• Daniel Siegel, M.D, Smithtown, NY


• Alexander J. Silver, New York, NY


• Jouni Uitto, M.D., Ph.D., Philadelphia, PA


• Timothy Wiebe, Moon Township, PA


• Sonya Wilander, Hailey, ID

• H.R.H. Princess Elizabeth of Yugoslavia, New York, NY


• Ronald Kulkin, Neutrogena Dermatologics, Los Angeles, CA


• Irwin Redlener, M.D., New York Children's Health Fund, New York, NY

• Alan R. Shalita, M.D., SUNY Health Science Center (Chair)


• Alan Arbuckle, M.D.,University of Colorado at Denver and Health Sciences Center;


• Eugene A. Bauer, M.D., Stanford University School of Medicine


• Susan Bayliss, M.D., Washington University School of Medicine


• Gary Bellus, M.D., University of Colorado at Denver and Health Sciences Center


• Anna L Bruckner, M.D., Lucille Packard Children’s Hospital at Stanford


• Angela Christiano, Ph.D., Columbia University


• Richard A.F. Clark, M.D., SUNY Stonybrook


• Jonathan Alden Dyer, M.D., University of Missouri Health Care


• Ervin Epstein, Jr., M.D.,Children's Hospital Oakland Research Institute
  


• Nancy B. Esterly, M.D., Medical College of Wisconsin


• Jo-David Fine, M.D., Vanderbilt University


• Elaine V. Fuchs, Ph.D., Rockefeller University


• Sharon Glick, M.D., SUNY Downstate Medical Center


• Paul Honig, M.D., Children's Hospital of Philadelphia (CHOP)


• Gerald S. Lazarus, M.D., Johns Hopkins University


• Moise L. Levy, M.D., Baylor College of Medicine and Texas Children's Hospital


• Anne W. Lucky, M.D., Children's Hospital of Cincinnati



• Joseph McGuire, M.D., Stanford University School of Medicine


• Laurence Miller,M.D., Potomac, MD


• Kimberly D. Morel, M.D., New York-Presbyterian Hospital


• Amy Paller, M.D., Children's Memorial Hospital, Chicago


• Francis Palisson, M.D., La Universidad del Desarrollo, Chile


• Neil S. Prose, M.D., Duke University Medical Center


• Elena Pope, M.D., Hospital for Sick Children, Toronto


• Juliette Prendiville, M.D., University of British Columbia


• Dennis R. Roop, Ph.D., Baylor College of Medicine


• Lawrence Schachner, M.D., University of Miami School of Medicine


• Tor Shwayder, MD, Henry Ford Hospital


• Daniel Siegel, M.D., Dermatologic Surgery Institute


• Mary K. Spraker, M.D., Emory University Clinic of Woodruff Medical Center


• Jouni Uitto, M.D., Ph.D., Thomas Jefferson University


• Madeline Weiner, RN, Chapel Hill, NC


• Timothy Wright, D.D.S., University of North Carolina at Chapel Hill

• Arlene Pessar, R.N., Brooklyn, NY