Exceptional Parent Article

By Kathy Stagni

Stagni article

 

 

 

 

 

 

 

Newborn Screening & Parent Support Groups

Oral testimony presented by Ms. Kathy Stagni, Executive Director of the Organic Acidemia Association and parent of an adolescent with propionic acidemia, a metabolic disorder, to the Health and Human Services Policy Committee of the Minnesota House of Representatives on March 19, 2003

 

 

 

Newborn Screening Websites

National Coordinating Center for the Genetics and Newborn Screening Regional Collaborative Groups

http://genes-r-us.uthscsa.edu/resources/genetics/StatePages/genetic_region_map.htm

In 2004, the Maternal and Child Health Bureau of the Health Resources and Services Administration (MCHB/HRSA), Genetic Services Branch (GSB) awarded grants to establish seven Regional Genetic Service and Newborn Screening Collaborative Groups (RCs) and a National Coordinating Center (NCC) as part of 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 NCC is formed as a partnership with the GSB/MCHB/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. The Advisory Committee includes the seven RCs and representatives of national organizations that serve as resources to the NCC and the RCs.