Supporting the goals and ideals of the week of May 3, 2014, through May 10, 2014, as "National Osteogenesis Imperfecta Awareness Week" to celebrate the progress made, and recognize the work yet to be done toward educating our communities, promoting research programs and raising vital resources for doctors, nurses, and healthcare providers and everyone touched by the Osteogenesis Imperfecta community.

Bill: 113-hres-513
Sponsor: full_name: Rep. Ruppersberger, C. A. Dutch [D-MD-2]
Introduced: 2014-03-11
Policy area: Health
Subjects: Commemorative events and holidays

Hereditary and development disorders

Medical research

Musculoskeletal and skin diseases
Latest action: action_date: 2014-03-14
text: Referred to the Subcommittee on Health.

Summaries:
action_date: 2014-03-11
action_desc: Introduced in House
text: <p>Expresses support for the goals and ideals of National Osteogenesis Imperfecta Awareness Week and for efforts to educate people about Osteogenesis Imperfecta, to promote research, and to raise vital resources for doctors, nurses, and health care providers.</p> <p>Recognizes the critical importance of these goals and efforts as part of wellness strategies.</p>

tv_txt: IV 113th CONGRESS 2d Session H. RES. 513 IN THE HOUSE OF REPRESENTATIVES March 11, 2014 Mr. Ruppersberger submitted the following resolution; which was referred to the Committee on Energy and Commerce RESOLUTION Supporting the goals and ideals of the week of May 3, 2014, through May 10, 2014, as National Osteogenesis Imperfecta Awareness Week to celebrate the progress made, and recognize the work yet to be done toward educating our communities, promoting research programs and raising vital resources for doctors, nurses, and healthcare providers and everyone touched by the Osteogenesis Imperfecta community.

Whereas Osteogenesis Imperfecta (OI), also known as brittle bone disease is a genetic disorder characterized by fragile bones that break easily; Whereas the number of people in the United States affected with OI is estimated to be 25,000 to 50,000; Whereas a person with mild OI may experience a few fractures while those with the severe forms may have hundreds in a lifetime; Whereas OI occurs with equal frequency among males and females and among all racial and ethnic groups; Whereas at this time, there is no cure; Whereas it is thought that OI causes many other serious chronic medical conditions such as muscle weakness, joint laxity, fragile skin, hearing loss, brittle teeth, fatigue, easy bleeding and bruising, scoliosis, pulmonary disease, and cardiovascular disease; Whereas experienced medical care for OI is limited; Whereas a person is born with this disorder and is affected throughout his or her lifetime; Whereas despite the challenges of managing OI, most adults and children who have OI lead productive and successful lives; and Whereas May 3, 2014, through May 10, 2014, has been designated by the Osteogenesis Imperfecta Foundation as National Osteogenesis Imperfecta Awareness Week : Now, therefore, be it

That the House of Representatives— (1) supports— (A) the goals and ideals of National Osteogenesis Imperfecta Awareness Week ; (B) efforts to educate the people in the United States about Osteogenesis Imperfecta; (C) efforts to promote research; and (D) efforts in raising vital resources for doctors, nurses, and health care providers; (2) recognizes the critical importance of these goals and efforts as part of wellness strategies; and (3) calls on the people of the United States to observe National Osteogenesis Imperfecta Awareness Week with appropriate programs and activities.