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Welcome |
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Welcome to the Heartland Regional Genetics and Newborn Screening Collaborative. We are a collaborative network of genetics and newborn screening providers, advocates and other stake holders from Arkansas, Iowa, Kansas, Missouri, Nebraska, North Dakota , Oklahoma, and South Dakota .
The Heartland Regional Genetics and Newborn Screening (NBS) Collaborative works to improve: access to expanded newborn screening, professional and public genetics literacy, equitable access to genetics evaluation, counseling and testing services, and cooperation between neighboring states within the region. We facilitate and promote collaboration, assessment, planning, program development and evaluation, education, research and public policy activities related to these issues.
This web site is designed to facilitate communication within
the collaborative and to inform the collaborative of regional genetics resources, projects and events. The Heartland Regional Genetics and Newborn
Screening Collaborative welcomes you to use the resources contained in this site and invites your participation.
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Mission Statement |
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The Heartland Genetics Collaborative includes health professionals and advocates
who promote and improve health through quality medical genetics services, clinical
laboratory services, professional and public education, genetics research and public policy.
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News and Events |
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NCC Collaborator
The June 2008 issue of the National Coordinating Center (NCC) Newsletter is now available. It features articles on patient-related data collection activities and a report from the CGEN initiative being undertaken by the Utah Department of Health and the Genetic Science Learning Center at the University of Utah. See the NCC web site for more information.
June NCC Collaborator
GINA Is Signed Into Law!
At long last, the Genetic Information and Non-Discrimination Act (GINA) has passed both the House and the Senate, and was signed into law by the President on May 21.
This historic
legislation would prohibit group health plans and health insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition to developing a disease in the future. The legislation also would bar employers from using individuals’ genetic information when making hiring, firing, job placement, or promotion decisions. Read the full Press Release.
Pilot Projects Funded
The Regional Coordinating Center is pleased to announce the Heartland Regional Genetics and Newborn Screening Collaborative is funding two new pilot projects:
“Using an electronic child profile to enhance performance”, Nancy Hoffman, MO
“Newborn Screening, What Providers and Parents Need to Know”, Sharmini Rogers, MO
For more details, please see the Pilot Projects page.
President Signs
Newborn Screening Saves Lives Act of 2007
This bill
establishes grant programs to provide for education and outreach on newborn screening and coordinated follow up care once newborn screening has been conducted, and was signed by President Bush on April 24, 2008.
GovTrack.us. S. 1858--110th Congress (2007): Newborn Screening Saves Lives Act of 2007, GovTrack.us (database of federal legislation)
Join the Heartland List serve!
The Heartland list serve is designed to expedite communication between collaborative members, and keep members up-to-date on Heartland activities. We have an open list serve, which may be accessed on line at the link below. You may join, depart and/or read past messages:
Heartland List serve web page
Or email us at HRCC@ouhsc.edu and we would be happy to add you.
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Contact Information |
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Heartland Regional Coordinating Center
University of Oklahoma Health Sciences Center
940 N.E. 13th Street, CHO RM 2418, Oklahoma City, OK 73104
Phone: (405) 271-8685, Email: HRCC@ouhsc.edu
Last updated: 6/10/08
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