EB can often feel very lonely and overwhelming. It's important to be able to connect with others who understand and can offer advice and support. The Support Groups and Organizations page lists all known national and international EB organizations and support groups including their contact information and websites (where available). The E-mail Groups and Message Boards page lists all known EB e-mail support groups and message boards where you can keep in touch with the EB community.
I will so my best to keep these pages updated. Please e-mail me to report any broken links or to update or add any of the information listed. Thank you!