The Regional Genetic and Newborn Screening Service Collaboratives

In 2004 and 2007, the Maternal and Child Health Bureau of the Health Resources and Services Administration (MCHB/HRSA), Genetic Services Branch (GSB) awarded grants to seven Regional Genetic and Newborn Screening Service Collaboratives (RCs) and a National Coordinating Center (NCC) as part of larger on-going efforts to improve the health of children and their families by promoting the translation of genetic medicine into public health and health care services. The RCs work to strengthen and support the genetics and newborn screening (NBS) capacity of the States, and therefore the Nation, using a regional approach to addressing the maldistribution of genetic service providers. A fundamental goal of the overall program is to improve access to high quality healthcare services related to newborn screening and genetics within local communities. All activities and programs of the NCC/RC system strive to build linkages between primary care providers and medical home, geneticists, and other specialty providers, and public health, so that the needs of patients and families with heritable disorders are best served.

New England Genetics Collaborative (NEGC)

Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont

The NEGC strives to have meaningful family participation in all of its activities. The NEGC believes families want to contribute to regional efforts to create better outcomes. Families currently participate in many of the NEGC initiatives, including community & family network grants for non-profits, advisory committee, advocacy committee, work group volunteers, mailing lists, and resource use.

New York-Middle Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC)

Delaware, District of Columbia, Maryland, New Jersey, New York, Pennsylvania, Virginia, West Virginia

NYMAC continually strives to engage with consumer and advocacy groups to improve the health and well-being of people with special health care needs, especially those with a genetic component. To that end, NYMAC has sponsored consumer and advocate attendance at Genetic Alliance conferences, offered leadership and advocacy training, and is currently seeking applications from consumer groups within the NYMAC region for projects to develop outreach campaigns, educational materials, public service announcements, or to enhance their websites. We encourage consumers and advocates in our New York-Middle Atlantic region to join us on projects and activities as champions and partners.

Southeast Regional Newborn Screening and Genetics Collaborative (SERC)

Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, Puerto Rico, South Carolina, Tennessee, Virgin Islands

SERC is federally funded and dedicated to improving the health and quality of life of individuals with heritable disorders. Providing patients and families with up-to-date, relevant information about newborn screening (NBS) and genetics is an important goal of SERC.

Region 4 Genetics Collaborative

Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, Wisconsin

We work with over 50 parents from seven states to use their experience and expertise to develop projects with Region 4.

Heartland regional Genetics and Newborn Screening Collaborative

Arkansas, Iowa, Kansas, Missouri, Nebraska, North Dakota, Oklahoma, South Dakota

Consumer advocates are integral to the work of the Heartland Genetics and Newborn Screening Collaborative. The Heartland RC has an Advocate work group comprised of parents and advocates from each of the Heartland states. This group contributes the parent/patient perspective to the Heartland Advisory Board and each Heartland work group, reviews all products developed by the Heartland region, and represents Heartland at national meetings. The Advocate work group also created a resource database and financial resources guide for families, which are available on our website.

Mountain States Genetics Regional Collaborative

Arizona, Colorado, Montana, New Mexico, Nevada, Texas, Utah, Wyoming

Consumer participation in all MSGRCC supported activities is a priority. MSGRCC supports a Consumer Advocacy Workgroup to ensure that the consumer/family perspective is included in all aspects of MSGRCC work. Membership includes both consumers and professional members interested in consumer issues. The workgroup provides a venue for families to discuss major barriers to health care. MSGRCC funds travel for consumer participation in national meetings for the Genetic Alliance, ACMG, and SACHDNC, among others.

Western States Genetics Services Collaborative

Alaska, California, Guam, Hawaii, Idaho, Oregon, Washington

The Western States Genetic Services Collaborative (WSGSC) works closely with family advocates and consumers in planning, executing, and evaluating all activities. Our Family Advocates Work Group includes family advocates from the six western states and Guam. Members of the work group are family leaders, representing family organizations in their state, and serve as a liaison between the WSGSC and all families in the region.

Learn more about newborn screening, which disorders are screened for in your state, and other frequently asked questions. More

Pregnant Families

Learn what it means when your baby initially screens positive for a disorder. What questions should you ask your doctor? What resources are available? More

Initial Positive Screens

Find support groups for and learn more about your baby’s disorder, learn about additional resources available to you and your family. More

Families with Diagnoses

Access Save Babies Through Screening Foundation's extensive links to resources available to support you, learn about screenable disorders. More


Newborn screening saves babies, one foot at a time.

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