Epidermolysis Bullosa is a rare condition, and Drs are not always free to give out information about other parents or patients in the area or anywhere that might help because of different laws. This is why a volunteer database from willing parents/patients was started.
This database has names and email addresses and phone numbers from EB families all over the world that are willing to talk to new parents.
Because we want to keep this database available to only other EB families, make sure to reply to the introductory message with your personal EB legacy. Subscribers wishing to join who do not reply to the initial message within 10 days will be automatically denied membership. We do this to secure the families belonging to the database and keep lurkers and possible trouble out.
This database is downloaded once a month and upon subscription.
Please refer to this URL to be added to the database: