Kisses for EB is dedicated to assisting children and families living with the rare disease Epidermolysis Bullosa.
We are committed to spreading awareness for Epidermolysis Bullosa by telling the stories of our friends and families whose lives have been affected by EB.
Kisses for EB hosts two annual signature events that raise funds and awareness for our organization. These funds are used to help children and families that need assistance.
Epidermolysis Bullosa (EB) is a group of rare genetic conditions that result in easy blistering of the skin and mucous membranes. Blisters occur with minor trauma or friction and are very painful.
Children diagnosed with EB are often referred to as “butterfly children,” because their skin is as fragile as a butterfly’s wings.
Every year in the United States over 200 children are born with Epidermolysis Bullosa. That’s in addition to the approximately 25,000 people already living with EB.
People with EB live with constant excruciating physical pain, which is a huge factor for the emotional distress caused by the disease. Coping with EB also inflicts tremendous financial challenges to the individuals and families affected.
The severity, rarity, and immense hardships brought on by EB is why it is also referred to as “the worst disease you’ve never heard of”.