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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.
  • 1986Joan 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
  • 1992Health 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.
  • 1996Mary 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. 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
    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 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


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