Federal Legislation & Public Policy Information

Welcome to the legislative advocacy portion of our Website. In keeping with our mission the Committee on Federal Legislation advocates enhanced MPS research in the pursuit of treatments for MPS and related disorders. We work with Congress, the NIH, FDA and Department of Education to advance public policy that will benefit MPS families.

Here you will find information on important public policy issues, our advocacy efforts on Capitol Hill and with federal agencies as well as how you can get involved. We encourage all MPS Society members to visit frequently to learn more about what your MPS Society is doing to represent you.  If you would like to become a member of PWP, please sign up here.

Now Available: Packet for members who want to meet with their Legislators. Contact Stephanie Bozarth at stephanie.bozarth@mpssociety.org.

Index of Legislative Information Resources Statements, summaries, testimony and other information of interest:
Embryonic Stem Cell Research and Therapeutic Cloning Policy Issues
MPS Society Survey Response from Sen. Judd Gregg
Rare Diseases & MPS Comments by Con. Ron Kind
Improving Special Education Services for Children with Degenerative Disorders and the Individuals with Disabilities Education Act
MPS Society FDA Congressional Statement
FDA Congressional Statement Glossary
NINDS Program Announcement with Set Aside Funds for Blood Brain Barrier Research
House LHHS Appropriations Bill Report #108-88 FY04 NINDS
Cures Acceleration Network 2010
Lifespan Respite Care 2010
ODE appropriation DC 2010
Rare Disease Caucus for DC 2010
Letter to the Honorable Margaret Hamburg, MD
Letter to the Honorable Kathleen Sebelius
Letter to Chairman Upton and Representative DeGette: Access to 21st Century Cures for Individuals with Rare Diseases

Federal Legislative Links At The National MPS Society
We are committed to informing the public about government agencies, programs, and benefits that will help families who are coping with MPS. Below are a list of links that we selected to better inform you about your local, state, and federal government.
Government Link – Description
firstgov.gov “First gov, Your First Click to the US government”. Find out about local, state, and federal government agencies, programs and benefits.
house.gov website of the United States House of Representatives. Find your representative, keep up to date on events on the House floor, or contact your representative.
NIH.gov National Institute of Health website. Find news, health information and links to NIH institutes, centers and offices.
senate.gov website of the United States Senate. Find your Senator, keep up to date on events or contact your Senator.
thomas.loc.gov Official website of the Library of Congress, view legislation, the congressional record, committee pages and contact your elected officials.

MPS Society members and government officials who wish to learn more, please feel free to contact us. We welcome your comments.
Stephanie Bozarth
(Mother of Annabelle, MPS IV)
Board of Directors, Vice President
Legislative Committee Chair
E-Mail: stephanie.bozarth@mpssociety.org


March 2007 NIH-sponsored Scientific Meeting
Please click below to read the executive summary of Towards Clinical Progress in the Mucopolysaccharidoses, a landmark scientific meeting sponsored by the MPS Society and NIH.