Most EB families will already be familiar with the organization DebRA (www.debra.org) and its global counterpart DebRA International (www.debra-international.org), but there are other helpful web links that can offer valuable information about skin conditions and treatment, the latest on government healthcare reform and EB research studies in progress or about to launch, among other sites. Here’s a handy list that you may want to check out and perhaps bookmark if it’s a site you’d like to explore further. And if you have any helpful websites to suggest to other EB patients and families, please let us know by leaving a comment or emailing Leslie at leslie.rader@hollisterwoundcare.com.

• HealthReform.gov (www.HealthReform.gov)
  Any parent needs to stay abreast of the latest developments with the government’s current bills to reform healthcare in the U.S. Check this one frequently because proposed bills continue to undergo revision after revision.
• National Institute of Arthritis, Musculoskeletal and Skin Diseases (www.niams.nih.gov/)
  This healthcare information library is compiled and updated by the National Institutes of Health, Department of Health and Human Services. Besides medical data, it offers current information about available funding and clinical trials for patients seeking additional resources.
• EB Info World (www.ebinfoworld.com)
  This site offers parents care tips, support group information and patient/family stories to offer both inspiration and education.
• The Electronic Textbook of Dermatology (www.telemedicine.org/stamford.htm)
  This online resource developed by the Internet Dermatology Society defines various skin conditions and blistering diseases, including EB, but provides other helpful dermatology information (though quite scientific in its delivery of the content).
• United Survivors with Epidermolysis Bullosa (www.ebsurvivors.org)
  This site is managed by USeb, a nonprofit group run primarily by people diagnosed with EB. The group coordinates specialized camps designed specifically for children and teens with EB and run by adults with EB. They also are building both scholarship and mentoring programs for young patients living with EB.
• Epidermolysis Bullosa Medical Research Foundation (www.ebkids.org)
  This nonprofit organization primarily raises funds for EB research and awareness through several celebrity events and promotions which also raise funds for the foundation.
• Befriend EB (www.befriendeb.com)
  This nonprofit organization befriend EB assists children and adults who suffer from Epidermolysis Bullosa by providing financial assistance to purchase essential supplies and equipment including bandages, ointments, nutritional supplement, at-home nursing care services, wheelchairs and custom-made shoes and clothing. Befriend EB also provides financial assistance for travel costs to attend educational conferences about EB that are held throughout the United States.
• Epidermolysis Bullosa Friends (www.ebfriends.ning.com)
  The website serves as a support network for people with EB as well as caretakers, family members, friends or concerned citizens who gather here to share information and stories.