PENNSYLVANIA, October 24 - forms are relatively less common and affect the patient more

severely; and

WHEREAS, The presence and type of EB is differentiated by the

gene that is affected and the particular protein that is

produced by that gene, therefore, EB can be the result of a

mutation in genes that produce 1 of 18 different structural

proteins; and

WHEREAS, It has been estimated that 1 out of every 20,000

births, which is approximately 200 children a year, is affected

with some type of EB, and the disorder occurs in every group

throughout the world and affects both sexes equally; and

WHEREAS, With skin as fragile as a butterfly wing, EB

patients are dubbed "Butterfly Children" because on the outside,

physical wounds prevent them from normal daily activities

enjoyed by other children and the slightest friction produces

agonizing wounds that can cover up to 75% of their bodies; and

WHEREAS, Unfortunately, there is a lack of long-term research

surrounding EB, in other words, most physicians, nationally and

internationally, are unaware of the disorder and its

complexities, thus resulting in less than optimal treatment

options for even the most common secondary complications; and

WHEREAS, Researchers from around the globe are investigating

new therapies to treat and cure EB, thereby leading to a better

quality of life; and

WHEREAS, It is imperative that there is a greater public

awareness of this serious health issue and more must be done to

increase activity at the national, State and local levels to

support the patients as well as their families; therefore be it

RESOLVED, That the Senate designate the week of October 25

through 31, 2025, as "Epidermolysis Bullosa Awareness Week" in

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