Bill > SR181

This resolution designates the week of October 25 through 31, 2025, as "Epidermolysis Bullosa Awareness Week" (also known as "Butterfly Children Awareness Week") in Pennsylvania, seeking to raise public understanding about a rare, genetic connective tissue disorder. Epidermolysis Bullosa (EB) is a condition characterized by extremely fragile skin that forms painful blisters both internally and externally, with no current cure, and impacts approximately 200 children per year, occurring across all demographic groups. The resolution highlights the severe nature of EB, which can cause constant pain, scarring, and potentially early death, especially in more serious forms where patients may not survive past their third decade of life. By designating this awareness week, the resolution aims to draw attention to the complexities of the disorder, support ongoing research into new therapies, and encourage greater public understanding of the challenges faced by "Butterfly Children" - a term used to describe EB patients due to their skin's extreme fragility. The resolution also recognizes that most physicians are currently unaware of the disorder and its intricacies, and seeks to promote increased awareness and support for EB patients and their families.

Government Affairs

https://www.palegis.us/legislation/bills/2025/sr181