NY K02438

Requests Governor Kathy Hochul proclaim October 25-31, 2024, as Epidermolysis Bullosa Awareness Week in New York State, also known as Butterfly Children Awareness Week

Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder characterized by fragile skin and recurrent blister formation with no current cure

Approximately one in every 20,000 live births (about 200 children per year) are affected with EB; severe forms cause constant pain, scarring, disfigurement, disability, and often early death before the third decade of life

Current treatment limited to daily wound care, preventative bandaging, and pain management; many physicians lack knowledge of the disorder, and insurance coverage limitations restrict access to adequate wound care supplies

Directs transmission of the resolution to Governor Hochul to raise public awareness and support for EB patients and their families