My friend had a little boy with that disease. (Epidermolysis bullosa (EB)). It was heartbreaking what her baby went through. Passed away at just almost three, covered in wounds, blind, etc. she couldn’t even hold her own baby before he passed or it would tear his skin off. Her rotten, no good husband left her after the baby was born and she moved in her folks house and they helped her take care of this sweet baby. She met an awesome man who she married and went on to have more children with, and none of them had EB.
My other friend started a foundation called the Butterfly Fund and it’s a fantastic foundation to donate to. All of the money goes to the research and there is an amazing doctor in MN who has devoted his research to this.