Archives and History

The History of Genetic Alliance

Genetic Alliance has a culture of understanding that we are a part of a much bigger whole. We have spent a good deal of time and energy creating a culture of boundarilessness. A culture of WE. A culture of openness. It is this culture that leads us straight into our history. Begun in 1986, we were first just a gleam in our founder Joan Weiss' eye. She fearlessly went where no human had yet tread - into creating a system for patient support and advocacy organizations dedicated to genetic conditions to grow together - the Alliance of Genetic Support Groups (AGSG). This, before the Human Genome Project had started!

Ms. Weiss, a social worker, led the AGSG until 1996, when Mary Davidson became the second Executive Director. Mary, also a social worker like Joan, brought us from focusing solely on patient organizations, into a partnership with the other stakeholders in the continuum of research to services. She began the effort to build a coalition to take on genetic information discrimination, that ultimately led to the passage of the Genetic Information Nondiscrimination Act of 2008. Mary understood that Genetic Alliance was part of an enormous transformation taking place in participant-centric research and services.

AGSG changed its name to Genetic Alliance in 2000. Sharon F. Terry was elected the President and CEO of Genetic Alliance in 2004.

Along the way there have been some major supporters of Genetic Alliance, so big they must be named here. Michele Puryear, former chief of the Genetic Services Branch of the Maternal and Child Health Bureau (MCHB) of the Health Resources Services Administration (HRSA), above all. Her deep understanding of the rightful place of families and lay organizations in the healthcare system allowed Genetic Alliance to grow from a small grant of MCHB of the HRSA to the robust organization it is today. Michele brought her vision for community engagement, combined with her expertise in medicine, and underserved communities, to Genetic Alliance and shaped who we were through our adolescent years. Muin Khoury saw the role we have to play in public health genomics, and we have often spent time side by side in the same trenches fighting to realize the power of the tools we have in our hands today. Steve Groft has been a staunch supporter through the years, even as rare diseases began to gain traction as a result of his actions, we were given many opportunities to contribute to that growth. Friends in industry and academia sustained us through the years, including Randy Scott (Genomic Health and InVitae), Reed Tuckson (formerly UnitedHealth Care, and now Tuckson Healthcare Connections) and Alan Roses of Zinfandel Pharmaceuticals. We are fortunately to have them and many many others, including our current Council, who call themselves the 'body that loves Genetic Alliance'.

Genetic Alliance Archives

For more than 30 years, Genetic Alliance has connected thousands of stakeholders to critical information about genetics. Genetic Alliance has been a resource for all, engaging individuals, families, and communities through a wide array of programs. These programs are in constant evolution to adapt to the changing needs of the present, providing a vast historical foundation for the initiatives of the future.

The Genetic Alliance Archives are a repository for this historical foundation. Through scanned and born-digital materials, the Archives document the work and vision of Genetic Alliance. The collections are provided to foster a better understanding of the development of Genetic Alliance and the larger history of advocacy.

Overview of the Collections

The Archives are comprised of eight main collections, each stored as a unique archive. As content from our website becomes ready to retire, materials are transferred to archival pages and added to the collections. The following are the collections that constitute the Genetic Alliance Archives:

Annual Reports Archive : This archive contains the annual reports of Genetic Alliance and the Alliance for Genetic Support Groups.

Events Archive: This archive contains a record of past events hosted by Genetic Alliance and the Alliance for Genetic Support Groups.

Multimedia Archive: This archive contains photos and videos related to Genetic Alliance events and projects.

Newsletter Archive : This archive contains issues of the Alliance Alert (1980s – 1998) and the Advocacy in Genetics Newsletter (2004 – 2010), the regular newsletters of the Alliance for Genetic Support Groups and Genetic Alliance, respectively. The newsletters are sorted chronologically.

Past Programs Archive : This archive contains a record of policy statements issued by Genetic Alliance and the Alliance for Genetic Support Groups.

Policy Statement Archive : This archive contains a record of policy statements issued by Genetic Alliance and the Alliance for Genetic Support Groups.

Press Release Archive : This archive contains past press releases issued by Genetic Alliance and the Alliance for Genetic Support Groups. The releases are sorted chronologically, listed by name and date of issue.

Publications Archive : This archive contains monographs and other publications issued by Genetic Alliance and the Alliance for Genetic Support Groups.

Webinar Archive: This archive contains stored recordings of Genetic Alliance hosted webinars.