Introduction

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