During the history of an organization, various programs are initiated and, once having served their purpose, are completed. Not wanting to let the knowledge of these programs fade into oblivion, this archive holds information related to these initiatives. More detailed information about these programs can be found throughout the History section and the various Genetic Alliance archives.
Genetic Alliance Past Programs (2012-2005)
In 2008, Genetic Alliance invited organizations to customize the Does It Run In the Family? Toolkit and disseminate it within existing programs and initiatives to integrate conversations about family health history seamlessly into diverse communities across the country. Read project proposals and final report summaries and learn more about our partner organizations.
Congenital Conditions Program (f. 2009)
In 2009, the Health Resources and Services Administration (HRSA) awarded Genetic Alliance, in partnership with the National Coalition for Health Professional Education in Genetics and other partners, a four year $3.28 million cooperative agreement for the implementation of the Prenatally and Postnatally Diagnosed Conditions Awareness Act (PPDCAA). The partners were charged with developing models for connecting families who receive a diagnosis of a genetic condition for their child prenatally or within the first year of life with information and support, beginning with three conditions: Down syndrome, spina bifida and dwarfism. Funding for the program elapsed in 2011.
Resource Repository (f. 2007)
Announced on May 7, 2007, the Genetic Alliance Resource Repository was established as "a robust document repository service that aggregate[d] the combined resources of advocates, healthcare professionals, government agencies, think tanks, and other contributors." The Repository underwent extensive renovation in 2008 and was relaunched in the following year.
Advocates Partnership Program (f. 2005)
Partnering with the American Society of Human Genetics (ASHG), the American College of Medical Genetics (ACMG), and the National Society of Genetic Counselors (NSGC), Genetic Alliance offered an Advocates Partnership Program integrated into annual meetings across the country. The program was designed to foster collaborations between the advocacy community (including disease-specific and community organization leaders, individuals and families affected by genetic conditions, and students/youth) and health professionals. Up to 20 advocates attended each conference and participated in exclusive meetings with leaders in the fields of clinical genetics, scientific research, drug and test development, and government.
Launched as a five-year project through a cooperative agreement from the Genetic Services Branch of the Maternal and Child Health Bureau of the Health Resources and Services Administration, the NCCGRS grant supported a variety of Genetic Alliance projects. The Center was established in support of four goals: 1) transform advocacy to release the potential of all organizations; 2) enable informed decision-making about genetic research, trials, and services; 3) incentivize new structures that encourage expanding shared resources, and; 4) build and maintain partnerships that enable acceleration of service delivery to individuals and families in need of genetic technologies and treatments. At the conclusion of the 5 years, the programs supported by the grant were retained under a new partnership with the American College of Medical Genetics.
Launched through a cooperative agreement with the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention (CDC), this Resource Network was based on two rare disorders, Duchenne/Becker muscular dystrophy (DBMD) and fragile X syndrome (FXS), with the goal of exporting the methods developed to evaluate or create accurate information for these disorders for use towards other rare disorders and even more common, complex conditions. The flagship programs of the ATCG Resource Network was the development of the Trust it or Trash It tool, launched in 2009 during the Network's fourth year.