Bill > K00589

This resolution memorializes Governor Kathy Hochul to officially proclaim October 25-31, 2025, as Epidermolysis Bullosa (EB) Awareness Week in New York State, also known as Butterfly Children Awareness Week. EB is a rare, genetic disorder characterized by extremely fragile skin that forms painful blisters both inside and outside the body, with no current cure. The resolution highlights that EB affects approximately 200 children per year across all racial and ethnic groups, with severity ranging from mild to life-threatening, and some severe cases leading to early death before the third decade of life. The condition requires extensive daily wound care, can cause numerous secondary health complications, and significantly impacts patients' quality of life. The resolution aims to raise public awareness about this challenging disorder, noting that most physicians have limited knowledge about EB, and insurance coverage for necessary treatments can be inadequate. By designating this awareness week, the legislative body seeks to increase understanding, support research efforts, and draw attention to the struggles faced by those with this rare and painful genetic condition, particularly children who are often referred to as "Butterfly Children" due to their skin's extreme fragility.

https://www.nysenate.gov/legislation/bills/2025/K589