About Us

Our organization has just begun. Our mission is to help families living with the disabling disease Epidermolysis Bullosa.

Epidermolysis Bullosa is a rare genetic skin disorder. One thing to describe its rareness is that a doctor or a nurse can be working a lifetime and never bump into this condition. It is estimated that about 10,000 Americans, mostly kids, have some form of EB. With modern medical care, some with the worse kinds of EB can live into their thirties. Unfortunately, by this age most will succumb to a particularly aggressive skin cancer (Squamous Cell Carcinoma) that is somehow touched off by EB. Of these 10,000 effected, less than 300 have the same kind as Nicky's (he has the Hallopeau-Siemens subtype because of the webbing and contracting of his fingers and toes), making the RDEB form so rare than only one out of every one million babies is born with it.

What does the name mean?
The skin is made up of a number of different layers. The outer is called the epidermis; the inner layers are the dermis."Bullosa" is simply the name for a blister and "lysis" means breakdown. Hence, Epidermolysis Bullosa means the breakdown and blistering of the epidermis.

What is our Goal?
Bandages for Babies is an organization whose goal is to raise awareness of this lifelong disease. Eventually we hope to raise money to help families pay for the incredible expenses of bandages. There is currently no cure for EB. The only treatment is to keep the child bandaged therefore protecting his or her delicate and fragile skin.