Skip Navigation

Strengthen the Evidence for Maternal and Child Health Programs

Search Results: MCH Organizations

This list of organizations is drawn from the MCH Organizations Database. Contact information is the most recent known to the MCH Digital Library.


Displaying records 1 through 10 (10 total).

Heartland Regional Genetics and Newborn Screening Collaborative

Annotation: The Heartland Regional Genetics and Newborn Screening Collaborative -- formerly the Great Plains Regional Network -- encompasses the eight states of Arkansas, Iowa, Kansas, Missouri, Nebraska, North Dakota, Oklahoma, and South Dakota, all working together to promote access to quality clinical genetic services, genetic testing, and public health programs for the citizens of the states within the Heartland collaborative. The 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. The collaborative aims to facilitate and promote collaboration, assessment, planning, program development and evaluation, education, research and public policy activities related to these issues. The web site is designed to facilitate communication within the collaborative and to inform the collaborative of regional genetics resources, projects and events. The collaborative is one of seven Genetics and Newborn Screening Regional Collaborative Groups (RCs) designated by the Genetics Services Branch, Bureau of Maternal and Child Health, Health Resources and Services Administration in 2004.

Keywords: Genetics, Genetic services, Newborn infants, Neonatal screening, Regional genetics network, Arkansas, Iowa, Kansas, Missouri, Nebraska, North Dakota, Oklahoma, South Dakota, Public health, Federal programs

National Association of Neonatal Nurses (NANN)

Annotation: The National Association of Neonatal Nurses (NANN) serves as a forum for continuing education and information exchange, and it promotes legislation to improve neonatal nursing and health care for newborns and their families. Their services to consumers include referrals and reference information. NANN publishes a newsletter and journal, and sponsors conferences and training seminars.

Keywords: Infant health, Continuing education, Health services, Neonatal intensive care, Neonatal nursing, Newborn infants

National Center on Birth Defects and Developmental Disabilities, Early Hearing Detection and Intervention Program (EHDI)

Annotation: The Early Hearing Detection and Intervention (EHDI) program at the National Center on Birth Defects and Hearlng Disorders collaborates with federal, national, and state agencies and organizations in assisting states and territories to develop and implement EHDI programs and assists states in building EHDI data and surveillance systems to improve their capacity to ensure that all infants are screened for hearing loss and receive appropriate follow-up services. It supports research efforts to identify causes of hearing loss, determines developmental outcomes and family issues, collectsInformation on referral rates from EHDI programs, assesses the effectiveness and cost of EHDI programs, uses information gained through the EHDI surveillance systems to find new and preventable causes of hearing loss, and maintains an information clearinghouse on issues related to EHDI that will be available through the EHDI web site and bi-monthly teleconferences.

Keywords: Hearing screening, Hearing tests, Neonatal screening, Newborn infants

National Coordinating Center for the Regional Genetic and Newborn Screening Service Collaboratives

Annotation: The National Coordinating Center for the Genetics and Newborn Screening Regional Service Collaboratives (NCC) -- which was established along with seven Genetics and Newborn Screening Regional Collaborative Groups (RCs) in 2004 -- is part of the federal initiative to improve the health of children and their families by promoting the translation of genetic medicine into public health and health care services. The NCC provides infrastructure, coordination, technical assistance, and resources to the various RCs. The coordinating center also facilitates local projects and uses communities identified through the RCs to pilot test materials for policymakers, health professionals and families. Technical assistance is provided to the RCs in the areas of telemedicine, legal issues, and the assessment of state and federal legislation that may affect the delivery of genetic and newborn screening services. NCC's webcasts on topics such as financing of newborn screening and genetic services and the use of telegenetics to increase access to services are archived at www.mchcom.com. Other online resources include a page for parents and families; resources for professionals; links to glossaries and reference services; newsletters, reports, and other publications; and advocacy and support group information. The NCC is formed as a partnership with the Genetic Services Branch of the Maternal and Child Health Bureau (HRSA) through a cooperative agreement with the American College of Medical Genetics (ACMG). The NCC is organized around a central office and an Advisory Committee which includes the seven RCs and representatives of national organizations that serve as resources to the NCC and the RCs.

Keywords: Genetics, Resource centers, Federal programs, Genetic services, Genetics education, National MCH resource center, Neonatal screening, Newborn infants, Public health, Regional genetics networks

NetWellness

New England Genetics Collaborative (NEGC )

Annotation: The New England Genetics Collaborative (NEGC) works to promote and improve the health and social well-being of those with inherited conditions through collaborations among public health professionals, private health professionals, educators, consumers and advocates in Maine, New Hampshire, Vermont, Massachusetts, Rhode Island and Connecticut. The primary goal of the NEGC is to assure that individuals with genetic disorders and their families have access to quality care and appropriate genetic expertise and information in the context of a medical home that provides accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective care. NEGC provides online educational materials, a regional resource directory, and links to other genetics centers. The NEGC is a partnership between the Dartmouth Hitchcock Medical Center, the New Hampshire Institute for Health Policy and Practice, and the University of New Hampshire Institute on Disability. The collaborative is supported by a cooperative agreement with the US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Genetic Services Branch.

Keywords: Genetics, Consortia, Genetic services, Maine, New Hampshire, Vermont, Massachusetts, Rhode Island, Connecticut., Federal programs, Public health , Newborn infants, Neonatal screening, Genetic counseling, Regional genetics networks

New York-Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NYMAC )

Annotation: The New York-Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NYMAC) was established in September 2004 as one of seven regional collaboratives in the country funded by the Genetic Services Branch in the Health Resources and Services Administration (HRSA)'s Maternal and Child Health Bureau. The charge of this group is to develop a regional approach to address the maldistribution of genetic resources in the New York-Mid-Atlantic region, which includes Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Virginia and West Virginia. The Wadsworth Center, New York State Department of Health is the lead institution for this project.

Keywords: Regional genetics networks, Federal programs, Genetic services, Genetics, Newborn infants, Neonatal screening, Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Virginia, West Virginia., Public health

Region 4 Midwest Genetics Collaborative

Annotation: The Region 4 Midwest Genetics Collaborative is one of seven groups using a regional approach to improve access to services, quality care, and genetics expertise in a medical home environment that is culturally sensitive. The region 4 collaborative comprises public health agencies, geneticist and other subspecialists, primary care providers, newborn screening and genetic testing laboratories, and families of children with genetic conditions from seven states (Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, and Wisconsin). The website provides news and resources including information about partners, forums, workgroups, education, and regional meetings. The project is administered by the Michigan Public Health Institute and supported by the Health Resources and Services Administration Maternal and Child Health Bureau.

Keywords: Federal programs, Genetics, Genetic services, Regional genetics network, Newborn infants, Neonatal screening, Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, Wisconsin, Public health

Save Babies Through Screening Foundation

Annotation: Save Babies Through Screening Foundation works to improve the lives of children and their families, by working to prevent disabilities and death resulting from disorders detectable through newborn screening tests. The Foundation educates parents, pediatric healthcare providers, and policy makers about available comprehensive newborn screening, the importance of obtaining positive or other test results requiring follow-up actions within 5 days of birth, and the importance of prompt confirmatory testing and treatment/management when needed.

Keywords: Advocacy, Genetic screening, Neonatal screening, Newborn infants

Western States Genetics Services Collaborative (WSGSC )

Annotation: The Western States Regional Genetics Services Collaborative (WSGSC) is a federally funded project that seeks to improve the health of children living in the Western states who have disorders detected by the newborn screening blood test, birth defects and with other genetic disorders. WSGSC (working with California, Guam, Alaska, Hawaii, Idaho, Oregon, and Washington state) has three main goals: 1) to establish and maintain the infrastructure needed to support WSGSC activities; 2) to refine, pilot, and evaluate a regional practice model that improves access to specialty genetic services, comprehensive primary care, and care coordination for children with heritable conditions living far away from comprehensive genetics and metabolic centers; and 3) to increase the capacity of the collaborating states' and territory's public health agencies to perform their genetics-related assessment, policy development, and assurance functions. The project is a cooperative agreement funded by the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Children with Special Health Needs Program, Genetic Services Branch.

Keywords: Genetics, Federal programs, Genetic services, Newborn infants, Neonatal sceening, California, Guam, Alaska, Hawaii, Idaho, Oregon, Washington, Public health, Regional genetics network

   

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.