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ALS Registry Act
The Issue:
| The ALS Registry Act passed both chamber of Congress. Thank you for reaching out to your elected officials. Together we made a difference! |
Amyotrophic lateral sclerosis (ALS) is a progressive disease which affects thousands of Americans. However, a comprehensive national system to collect and catalogue information on the incidence of ALS in the United States does not exist.
Proposed Legislation:
ALS Registry Act (H.R.2295/ S.1382)
Sponsors: Congressman Eliot Engel (D-NY) [H.R.2295] and Senator Harry Reid (D-NV) [S. 1382].
Cosponsors: House of Representatives and Senate
Legislation Overview:
This legislation authorizes federal funding ($25,000,000 for fiscal year 2008, and $16,000,000 for each of the fiscal years 2009 through 2012) to establish a national registry. This bill directs the Centers for Disease Control and Prevention to:
- Develop a system to collect data on ALS and other motor neuron disorders.
- Establish a national registry for the compilation and storage of such data.
- Establish an Advisory Committee on the National ALS Registry to report and make recommendations to the Secretary of Health and Human Services.
- Coordinate with existing federal, state and local registries.
- Award grants to nonprofits to assist in the collection and reporting of data.
- Distribute information to the National Institutes of Health and Department of Veterans Affairs.
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