Programs
Genetic Alliance has developed a series of programs designed to increase the visibility of genetics and advocacy, establish strong networks and advance important campaigns, including community based family history. Our current programs include:
Access to Credible Genetics Resources Network
A Centers for Disease Control and Prevention (CDC) cooperative agreement to provide consumers and health professionals with increased access to quality information on the etiology, diagnosis, treatment and management of individuals with Duchenne and Becker muscular dystrophy (DBMB) and Fragile X syndrome (FXS).
Consumer Focused Newborn Screening
National Newborn Screening Clearinghouse
Genetic Alliance has received three cooperative agreements from the Genetic Services Branch of HRSA, HHS that address various aspects of newborn screening (NBS). These projects of regional and national significance will integrate consumer perspectives to craft tools and systems that emphasize access to information for improved understanding and informed decision-making capacity of expectant and new mothers and diverse stakeholders.
Community Centered Family Health History
Genetic Alliance is partnering with a diverse group of communities to create tailored family health history tools. We believe that accessible tools produced by the community, for the community, will promote conversations about health within the family and translate knowledge of family health history into healthy choices. Check back often to read about the project and see our products as we progress. This project is supported through a cooperative agreement from the Genetic Services Branch of the Maternal Child Health Bureau/HRSA/DHHS.
The Genetic Services Branch of HRSA, HHS awarded Genetic Alliance, in partnership with the National Coalition for Health Professional Education in Genetics and other partners, a cooperative agreement to implement sections of the Prenatally and Postnatally Diagnosed Conditions Awareness Act. The goal of the Congenital Conditions Program is to collect and disseminate evidence-based information, while coordinating the availability of supportive services for parents whose child receives a diagnosis prenatally, at birth, or up to one year after birth.
Genetics for Early Disease Detection and Intervention to Improve Health Outcomes
Millions of individuals with genetic diseases could benefit from early detection and intervention through a closer partnership between clinical medicine and public health. Genetics for Early Disease Detection and Intervention to Improve Health Outcomes (GEDDI) is a collaborative initiative funded by the Office of Public Health Genomics, CDC, that will analyze and initiate a systematic approach for detection and intervention using clinical, genetic, and family health history information.
