GSB/MCHB Technical
Assistance Meeting for Newborn Screening & Genetics
Infrastructure Grants
Resources
Genetics Briefs
State Abstracts
Title XXVI -
PDF file
Title V Information Website
Genetic Services Branch
Activities - Fact Sheets
A Compendium of Resources on Newborn Screening Policy and System Development
- Web link
Newborn
Screening Saves Lives Act of 2002 - Proposed Bill to Amend the Public
Health Services Act. Introduced by Senators Dodd and Dewine.
PDF file
Progress on the Promise- Reports of Actions to Eliminate Barriers and Promote Community Integration, March 2002.PDF file
Newborn Screening: A Blueprint for the Future
Executive Summary : Newborn Screening Tasks Force Report. PDF file
Integrating Genetic Services into Public Health - Guidance for State
and Territorial Programs from the National Newborn Screening and Genetics
Resource Center (NNSGRC) -
Downloadable PDF file
Community Genetics 4:3:2001,
175-196. Available with permission from S. Karger
AG, Basel 9Switzerland).
Integration of
Newborn Screening and Genetic Service Systems with Other Maternal Child
Health Systems - Link to meeting proceedings
page
Center for Innovation in Health Information
Systems: SourceBook and Self-Assessment
Guide
Family
Voices
Family Voices is a national, grassroots
clearinghouse for information and education concerning the health care of
children with special health needs. We stay on top of public and private
sector health care changes that affect our children and families through
the collective efforts of our families: a volunteer Coordinator in every
state; 10 Regional Coordinators; and a small staff working in several
locations around the country. Together, we share the expertise and
experiences of families from around the country with state and national
policymakers, the media, health professionals, and other families. We work
in public and private hospitals, public health programs, in state
capitals, in Washington, DC, serving on boards and task forces, working in
partnership with health professionals and policymakers, bringing the
family perspective to policy discussions and decisions. There are almost
40,000 Family Voices members - families of children with special health
needs and friends and professionals who know and love our children.
The Genetic Alliance
The Genetic Alliance is an international coalition of individuals, professionals and genetic support organizations that are working together to
promote healthy lives for everyone impacted by genetics. By making consumers
full and equal partners in the policy formulation process -- from start to
finish -- the promises of genetics research can be integrated effectively and appropriately into health care services and public policies. Consumers
bring an understanding of issues to the policy table, grounded in the personal experience of living with a genetic condition. With their strong
and meaningful contributions, new genetic policies will reflect the wisdom
of those with first-hand experience and protect those who will be impacted
by expanding genetic knowledge.
Some of the material above is presented in PDF format. If you
are unable to open the files you can download a free copy of Acrobat
Reader at the following link:
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