IV 

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. 

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; 


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•HRES 536 IH 

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 


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•HRES 536 IH 

1 Resolved, That the House of Representatives— 

2 (1) supports HHT Foundation International’s 

3 designation of a ‘‘National Hereditary Hemorrhagic 

4 Telangiectasia Month’’ and supports efforts to edu5 cate the public about HHT; 

6 (2) recognizes the need to pursue research into 

7 better treatments and an eventual cure for HHT; 

8 (3) supports the work of the HHT Foundation 

9 International to find a cure for HHT while saving 

10 lives and improving the well-being of individuals and 

11 families affected by HHT through research, out12 reach, education, and support; and 

13 (4) encourages the people of the United States 

14 and interested groups to observe and support the 

15 month through appropriate programs and activities 

16 that promote public awareness of HHT and poten17 tial treatments for it. 

Æ 


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