Mia Thrives Golf Tournament – Supporting Families affected by Epidermolysis Bullosa (EB)
Lunch, Silent Auction and Prizes
Sponsorship Opportunities Available
$125 per player
Epidermolysis Bullosa (EB) — “The Worst Disease You’ve Never Heard Of.”
Epidermolysis Bullosa or EB, is a rare genetic connective tissue disorder. There is no treatment or cure. 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. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. EB affects both genders and every racial and ethnic background equally. Daily wound care, pain management, and protective bandaging are the only options available for people with EB.