[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 536 Introduced in House (IH)]

111th CONGRESS
  1st Session
H. RES. 536

 Expressing support for the HHT Foundation International's designation 
of a ``National Hereditary Hemorrhagic Telangiectasia (HHT) Month'' and 
          supporting efforts to educate the public about HHT.


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                    IN THE HOUSE OF REPRESENTATIVES

                             June 11, 2009

    Mr. Neal of Massachusetts (for himself and Mr. Wilson of South 
Carolina) submitted the following resolution; which was referred to the 
                    Committee on Energy and Commerce

_______________________________________________________________________

                               RESOLUTION


 
 Expressing support for the HHT Foundation International's designation 
of a ``National Hereditary Hemorrhagic Telangiectasia (HHT) Month'' and 
          supporting efforts to educate the public about HHT.

Whereas HHT, also known as Osler-Weber-Rendu Syndrome, is a complex genetic 
        blood vessel disorder characterized by telangiectases and artery-vein 
        malformations that occur in major organs, including the lungs, brain, 
        and liver, as well as the nasal mucosa, mouth, gastrointestinal tract, 
        and skin of the face and hands;
Whereas left untreated, HHT can result in considerable morbidity and mortality, 
        including acute and chronic health problems or sudden death;
Whereas 20 percent of those with HHT, regardless of age, suffer death or 
        disability due to the sudden rupture of blood vessels in the major 
        organs in the body;
Whereas, due to widespread lack of knowledge of the disorder, approximately 90 
        percent of those suffering from HHT are not yet diagnosed and are at 
        risk for death or disability;
Whereas HHT is often misdiagnosed or mistreated;
Whereas tests exist for the early detection and proper diagnosis of HHT, and 
        certain treatments are available in facilities such as the 9 HHT 
        Treatment Centers of Excellence in the United States;
Whereas an estimated 20 to 40 percent of deaths and disabilities resulting from 
        HHT are preventable;
Whereas HHT is a national health problem that affects approximately 70,000 
        people in the United States and 1,200,000 worldwide;
Whereas a leading academic institution has estimated that $6,600,000,000 of one-
        time health care costs can be saved by the aggressive management of the 
        HHT at-risk population;
Whereas support is needed for research, outreach, and education to prevent death 
        and disability, improve outcomes, reduce costs, and increase the quality 
        of life for people living with HHT;
Whereas ``National Hereditary Hemorrhagic Telangiectasia Month'' will increase 
        public awareness of HHT; and
Whereas the HHT Foundation International has designated June as ``National 
        Hereditary Hemorrhagic Telangiectasia Month'': Now, therefore, be it
    Resolved, That the House of Representatives--
            (1) supports HHT Foundation International's designation of 
        a ``National Hereditary Hemorrhagic Telangiectasia Month'' and 
        supports efforts to educate the public about HHT;
            (2) recognizes the need to pursue research into better 
        treatments and an eventual cure for HHT;
            (3) supports the work of the HHT Foundation International 
        to find a cure for HHT while saving lives and improving the 
        well-being of individuals and families affected by HHT through 
        research, outreach, education, and support; and
            (4) encourages the people of the United States and 
        interested groups to observe and support the month through 
        appropriate programs and activities that promote public 
        awareness of HHT and potential treatments for it.
                                 <all>