EB Conference 2024

Suppose you or someone you know has a very rare genetic disorder and you are the only person in your town or you have never met another person with the same disorder. Would you attend an event where other persons are just like / similar to your condition be beneficial?  DEBRA of America holds its EB conference every 2 years and Kisses For EB goal is to help EB families attend.  Help us make this possible - donate today - We appreciate all donations and prayers.

Epidermolysis Bullosa, or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). 

There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. The list of complications and secondary illnesses can be long and requires multiple interventions from a range of medical specialists. EB affects all genders and racial and ethnic groups equally. 

There is no treatment or cure, but researchers are making tremendous strides in developing therapies. The current standard of care is supportive, which includes daily wound care, pain management, and protective bandaging. 

Our Journey Started January 2015 with the birth of my grandson, Kiba. www.kissesforeb.com