IV 
109TH CONGRESS 
1ST SESSION 
H. RES. 335 
Supporting the goals and ideals of a National Epidermolysis Bullosa Aware-
ness Week to raise public awareness and understanding of the disease 
and to foster understanding of the impact of the disease on patients 
and their families. 
IN THE HOUSE OF REPRESENTATIVES 
JUNE 21, 2005 
Mr. BISHOP of New York (for himself and Mr. KING of New York) submitted 
the following resolution; which was referred to the Committee on Energy 
and Commerce 
RESOLUTION 
Supporting the goals and ideals of a National Epidermolysis 
Bullosa Awareness Week to raise public awareness and 
understanding of the disease and to foster understanding 
of the impact of the disease on patients and their fami-
lies. 
Whereas epidermolysis bullosa is a rare disease characterized 
by the presence of extremely fragile skin that results in 
the development of recurrent, painful blisters, open sores, 
and in some forms of the disease, in disfiguring scars, 
disabling musculoskeletal deformities, and internal blis-
tering; 
Whereas approximately 12,500 individuals in the United 
States are affected by the disease;
•HRES 335 IH 
Whereas data from the National Epidermolysis Bullosa Reg-
istry indicates that of every one million live births, 20 in-
fants are born with the disease; 
Whereas there currently is no cure for the disease; 
Whereas children with the disease require almost around-the- 
clock care; 
Whereas approximately 90 percent of individuals with 
epidermolysis bullosa report experiencing pain on an av-
erage day; 
Whereas the skin is so fragile for individuals with the disease 
that even minor rubbing and day-to-day activity may 
cause blistering, including from activities such as writing, 
eating, walking, and from the seams on their clothes; 
Whereas most individuals with the disease have inherited the 
disease through genes they receive from one or both par-
ents; 
Whereas epidermolysis bullosa is so rare that many health 
care practitioners have never heard of it or seen a patient 
with it; 
Whereas individuals with epidermolysis bullosa often feel iso-
lated because of the lack of knowledge in the Nation 
about the disease and the impact that it has on the body; 
Whereas more funds should be dedicated toward research to 
develop treatments and eventually a cure for the disease; 
and 
Whereas the last week of October would be an appropriate 
time to recognize National Epidermolysis Bullosa Week 
in order to raise public awareness about the prevalence 
of epidermolysis bullosa, the impact it has on families,
•HRES 335 IH 
and the need for additional research into a cure for the 
disease: Now, therefore, be it 
Resolved, That the House of Representatives— 
(1) supports the goals and ideals of a National 
Epidermolysis Bullosa Awareness Week to raise pub-
lic awareness and understanding of epidermolysis 
bullosa; 
(2) recognizes the need for a cure for the dis-
ease; and 
(3) encourages the people of the United States 
and interested groups to support the week through 
appropriate ceremonies and activities to promote 
public awareness of epidermolysis bullosa and to fos-
ter understanding of the impact of the disease on 
patients and their families. 
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