About eb-family

We are in the process of setting up an open pro-bono portal that will make instant assistance available free of charge.

The number of people who are familiar with epidermolysis bullosa and the meaning of the term is very limited indeed. Hence we have made it our business to gather this small group of people — almost a small family of sorts — in a place where we can compare notes and exchange know-how, and a forum for lending a helping hand to each other or to engage in trust-based conversation. In short, this is the purpose of creating eb-family.

This is the place where those affected, family, health professionals, teachers, social workers or anyone else who would like to learn more about EB will find advise and assistance. Any day may occasion new challenges in the lives of so-called butterfly children. Many of these issues may seem negligible or perfectly ordinary to outsiders. But for parents of an EB child, questions such as the following present themselves along with many other challenges on a daily basis, and none of them are easy.

For instance, parents may wonder:

  • Is it safe to breastfeed our child?
  • How do we bathe him or her?
  • What is the best way to tend to the wounds?
  • What do we do when wounds become infected?
  • Can our child go to preschool?
  • How do we apply for healthcare benefits?
  • What sort of shoes should we get?
  • How do I explain the disease to my child, and make it understand that it is different than other children?
  • Is it safe to keep pets?

Answering these quotidian questions is of the essence for the development of the child, or else influences his or her quality of living. Our motive for launching the eb-family project is precisely to address these questions, and to encourage anyone or any institution taking an interest to partake in the collaborative effort. We are in the process of setting up an open pro-bono portal that will make instant assistance available free of charge to anybody in need.