Proceedings, Debates of the U.S. Congress
SUPPORTING THE GOALS AND IDEALS OF A NATIONAL EPIDERMOLYSIS BULLOSA AWARENESS WEEK; Congressional Record Vol. 152, No. 135
(House of Representatives - December 08, 2006)
Text available as:
Formatting necessary for an accurate reading of this text may be shown by tags (e.g., <DELETED> or <BOLD>) or may be missing from this TXT display. For complete and accurate display of this text, see the PDF.
[Page H9256] From the Congressional Record Online through the Government Publishing Office [www.gpo.gov] SUPPORTING THE GOALS AND IDEALS OF A NATIONAL EPIDERMOLYSIS BULLOSA AWARENESS WEEK Mr. BARTON of Texas. Mr. Speaker, I ask unanimous consent that the Committee on Energy and Commerce be discharged from further consideration of the resolution (H. Res. 335) 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 families, and ask for its immediate consideration in the House. The Clerk read the title of the resolution. The SPEAKER pro tempore. Is there objection to the request of the gentleman from Texas? There was no objection. The Clerk read the resolution, as follows: H. Res. 335 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 blistering; Whereas approximately 12,500 individuals in the United States are affected by the disease; Whereas data from the National Epidermolysis Bullosa Registry indicates that of every one million live births, 20 infants 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 average 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 parents; 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 isolated 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, 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 public awareness and understanding of epidermolysis bullosa; (2) recognizes the need for a cure for the disease; 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 foster understanding of the impact of the disease on patients and their families. The resolution was agreed to. A motion to reconsider was laid on the table. ____________________