9th Annual
September 9th, 2023
Kisses for EB
Children diagnosed with EB are often referred to as “butterfly children,” because their skin is as fragile as a butterfly's wings.

Upcoming Events

Kisses for Epidermolysis Bullosa

Raffle Fundraisers Coming Soon!

More info coming soon!

A great time was had by all! Thanks for your support!


Thank you. Kisses For EB would not be able to bring awareness or assistance without your generous support.

We are a 501(c)3 charitable organization dedicated to bring assistance to individuals and families living with epidermolysis bullosa, a rare genetic disorder that causes blisters and tears of the skin for which there is no cure, 75% of one’s body may be covered in bandaged due to EB.

What is it like living with skin so fragile that any friction causes blisters and wounds so painful that it feels like a 3rd degree burn that never heals? What length would you go to have relief?

We invite you to participate as a Sponsor of the 9th Annual Butterfly Benefit and Motorcycle Ride. This event is to raise money for Kisses for EB to send EB families to the DEBRA Conference in July 2024. The event will be held at Refton Firehall, Refton, PA 

September 9, 2023 registrations starting at 8am

This is Kiba, these pictures were taken a few weeks ago.

Kisses for EB Kiba, A child with Epidermolysis Bullosa


Kisses for EB is dedicated to spreading awareness for Epidermolysis Bullosa by telling the stories of our friends and families whose lives have been affected by EB.