NORD's
Washington Office
Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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Senate Approves Newborn Screening Saves Lives Act
The U.S. Senate has unanimously approved the Newborn Screening Saves Lives Act (S. 1858). The bill now goes to the U.S. House of Representatives for consideration. Details.
Senate Approves Newborn Screening Saves Lives Act
On December 13, 2007, the Senate unanimously approved the Newborn Screening Saves Lives Act (S. 1858), sponsored by Senator Christopher Dodd (D-CT)! The bill now goes to the U.S. House of Representatives for consideration.
If enacted, this bill would:
- amend the Public Health Service Act to require the Secretary of Health and Human Services to award grants to eligible entities to provide education and training in newborn screening and congenital, genetic, and metabolic disorders to health care professionals and newborn screening laboratory personnel
- add as a condition for eligibility for grants for screening, counseling or healthcare services to newborns and children who have, or are at risk for, heritable disorders assurance of implementation of guidelines and recommendations of the Advisory Committee on Heritable Disorders in Newborns and Children
- require the Advisory Committee on Heritable Disorders in Newborns and Children to:
---make recommendations that include the heritable disorders for which all newborns should be screened; and,
---develop a model decision-matrix for newborn screening program expansion
- require the Secretary, acting through the Administrator, to
---establish a central clearinghouse for information on newborn screening; and,
---award grants for newborn screening educational programs and for a system to assess and coordinate treatment relating to congenital, genetic, and metabolic disorders
- require the Secretary, acting through the Director of Centers for Disease Control and Prevention (CDC), to provide for:
---quality assurance for screening laboratories
---population-based pilot testing for evaluating new screening tools; and,
--- a national contingency plan for newborn screening in the event of a public health emergency
- require the Secretary, acting through an Interagency Group, to:
---collect, analyze, and make available data on certain heritable disorders;
---operate regional centers to conduct applied epidemiological research on interventions to prevent poor health outcomes from such disorders; and,
---research and promote the prevention of poor health outcomes
- require the Secretary to establish the Hunter Kelly Newborn Screening Research Program
The full text of the bill can be found at http://thomas.loc.gov.
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Since 1983, working toward the prevention, treatment, and cure of rare
“orphan” diseases.
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NORD Resource Guide
The new and expanded NORD Resource Guide
(5th edition) is now available. It lists more than 1,300 organizations helping
people with rare disorders.
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Medical Assistance Programs
NORD’s Medication Assistance Programs provide specific prescription drugs to people who cannot
afford them. (Go to Article)
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