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:
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).
Genetic Alliance is a leader in the development and implementation of projects related to newborn screening. Past projects have included surveys of consumer attitudes on newborn screening and the utilization of social media in the dissemination of information about newborn screening. Baby’s First Test is a government funded, comprehensive resource for expectant and new parents, health professionals, industry representatives, and the public on newborn screening. In addition to providing general newborn screening information, this project also connects state and regional public health groups and facilitates data and resource sharing.
Genetic Alliance partners 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.
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.
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.