Introduction
The History of Genetic Alliance
Genetic Alliance was incorporated on October 31, 1986 as the Alliance of Genetic Support Groups. It was founded by Joan O. Weiss with the support and encouragement of Victor McKusick, the father of human genetics. Ms. Weiss, a social worker, led the AGSG until 1996, when Mary Davidson became the second Executive Director. AGSG changed its name to Genetic Alliance in 2000. Sharon F. Terry was elected the President and CEO of Genetic Alliance in 2004. (Stay tuned for more history!)
Genetic Alliance Through the Years
- 1983: Mid-Atlantic Regional Human Genetics Network (MARHGN) held a symposium entitled Genetic Disorders and Birth Defects in Families and Society: Toward Interdisciplinary Understanding.
- 1985: Mid-Atlantic Regional Human Genetics Network (MARHGN) held a symposium entitled Genetic Support Groups: Volunteers and Professionals as Partners.
- 1986: Joan Weiss founds the Alliance for Genetic Support Groups. First office opens in Chevy Chase, Maryland.
- 1988: Non-profit 501 (c) (3) status granted to the Alliance for Genetic Support Groups. Joan Weiss officially named Executive Director by board of directors.
- 1988: 1st edition of Directory of Genetic Support Groups published Alliance Empowerment conference
- 1989: 800 Number Genetic Information hotline established. Office moved in February 1989 to Washington, DC
- 1990: Joan Weiss secures HRSA funding for the Alliance (continues to the present day) New England Peer Support conference
- 1991: Peer Support Guide completed
- 1992: Health Insurance Resource Guide
- 1993: Healthcare in Flux: How will Families with Special Needs Fit in? conference
- 1994: Alliance for Genetic Support Groups publishes Informed Consent: Participation in Genetic Research Studies.
- 1996: Mary Davidson took over as Executive Director of Alliance for Genetic Support Groups. A gala and fund-raiser was held on October 12, 1996 to honor the Tenth Anniversary of the Alliance for Genetic Support.
- 1997: Coalition for Genetic Fairness is founded to work for Genetic Information Non-discrimination Act
Mary Davidson at White House kickoff for legislation protecting the privacy of genetic information - 1998: Forging Genetic Partnerships: Research, Policymakers, and Consumers conference
- 1999: Name changed to Genetic Alliance
- 2000: Cultural Diversity in Genetics conference
White House recognizes Genetic Alliance’s role in Human Genome Project - 2001: People’s Genome Celebration at the Museum of Natural History
- 2002: Directory of Genetic Support Groups becomes digital
Train the Trainer conference - 2003: Genetic Alliance BioBank is founded
Genetic Alliance spins off the Genetics and Rare Disease Information Center (GARD). - 2004: Joining Our Journeys: One Step at a Time conference
Sharon F. Terry becomes President and CEO.
Wikiadvocacy.org created. - 2005: Institute for Advocacy launched
Leadership in Alliance: Leveraging Voices, Advancing a Vision conference
Public campaign begins for NIH Open Access Policy - 2006: 20th Anniversary Celebration at the National Geographic Society
Excellence in Advocacy conference
Genetics Day on the Hill
Genomics, Cancer Care and Advocacy published
Understanding Genetics: A Guide for Patients and Health Professionals published - 2007: Eyes on the Prize: Truth Telling about Genetic Testing Summit and monograph published
Genetics Day on the Hill
Genetic Testing Stories monograph published
National Consumer Center for Genetics Resources and Services established
The Year of Advocate conference - 2008: Family Health History Tool is released
Genetics Day on the Hill
Genetic Information Non-discrimination Act passed
Making Sense of Your Genes: A Guide to Genetic Counseling published
Transformational Leadership conference - 2009: Discovering Openness in Health Systems conference
Genetics Day on the Hill
GeneScreen: A Night of Film on Health and Genetics Newborn Screening Summit
Trust It or Trash It: Creating & Assessing Health Information meeting and monograph - 2010: Advancing Novel Partnerships conference
Community-Centered Family Health History. Collaboration Across Communities: How Do You Make Research Community-Specific and Universally Relevant? published
Gene Screen: A Night of Film on Health and Genetics Genetics Day on the Hill
Research!America award: Paul G. Rogers Distinguished Organization Advocacy Award
Testimony before the House Committee on Oversight and Government Reform about Public Access to Federally Funded Research
Testimony before the House Appropriations Committee about gene patenting
Testimony before the House Committee on Science and Technology about standards
Translational Research Enterprise—What Are We To Do? Meeting - 2011: 25th Anniversary Celebration at the National Geographic Society
25th Anniversary Year conference
Baby’s First Test is launched
Clinical Research Forum’s Public Advocacy Award
Genetics Day on the Hill
Future of Public Health Genomics meeting
Platform for Engaging Everyone Responsibly (PEER) created - 2012: Directory of Diseases online becomes DiseaseInfoSearch.org
Genetic Testing and Data Management: Improving Health Outcomes, Disease Management, and Accountable Care Delivery Summit
PEER wins $350,000 to create crowdsourced cross-condition registry - 2013: Advocacy ATLAS: Accessible Tools for Leadership and Advocacy Success launched
Ashoka Changemakers First Prize for PEER
Beyond the Bloodspot summit
GenesInLife.org is launched Forbes Best Business Model for Transforming Health Systems for PEER
Newborn Screening Saves Lives Act reauthorized
Powerful Patient Data: Genomics and Family Health History in Health IT summit
Testimony before the Senate HELP committee on newborn screening - 2014: Community Engaged Network for All launched
Multimillion-Dollar Newborn Screening Award
Robert Wood Johnson Foundation Pioneer Award for PEER - 2015: Baby’s First Test available in Spanish
Fielded a national needs assessment Understanding Access to and Quality of Genetic Services
Genetic Alliance becomes part of the PCORnet Coordinating Center
Perinatal Nutrition Working Group finds new home in Expecting Health
Platform for Engaging Everyone Responsibly(PEER) recognized in White House conference - 2016: Building Trustworthiness in PCORnet conference
Sharon Terry presents at TEDMED
White House Precision Medicine Summit - 2017: Co-creating a Healthy Future: 30th Anniversary conference