[Congressional Bills 109th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 335 Introduced in House (IH)]






109th CONGRESS
  1st Session
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.


_______________________________________________________________________


                    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 families.

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.
                                 <all>