**New Release January 2024** Recommend Blood Work for All Forms of EB starting at age 1 OR for those who have never had blood work done befo...

Due to a side effect of a medication, we have gone from 90% oral feeds and 10% g-tube feeds, to 90% g-tube feeds and 10% oral feeds. Because...

Today we have a guest blogger with us!  Rachel is here to share a story about her husband Hon❤ I fell in love with a Butterfly… I met Hon ba...

Normally I would go in great depth and detail when it comes to EB statistics, however, I have had many of my ideas and posts "taken...

Aquaphor is probably the #1 ointment used among many with EB.  We don't use Aquaphor for a variety of reasons. And because of that I get...