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.
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.
CEO Sharon F. Terry is named an Ashoka Fellow, recognizing her work transforming biomedical research and healthcare by empowering individuals, families, and communities to drive discovery, treatment development, and systems change.
- 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.
Genetic Alliance participates in founding the International Rare Diseases Research Consortium (IRDiRC), bringing together international research funders, patient organizations, scientists, and industry to accelerate rare disease diagnosis and the development of therapies. CEO Sharon Terry serves in the consortium’s leadership.
- 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.
Genetic Alliance co-founds the Global Alliance for Genomics and Health (GA4GH), advancing international standards and policies for responsible genomic and health-related data sharing.
CEO Sharon Terry co-founds the EspeRare Foundation in Geneva, Switzerland, and serves as its founding president. EspeRare establishes a nonprofit model for advancing promising therapies for rare diseases, emphasizing drug repurposing, patient participation, and affordability.
- 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.
Genetic Alliance joins Duke Clinical Research Institute and Harvard Pilgrim Health Care Institute in the PCORnet Coordinating Center, leading efforts to strengthen engagement, collaboration, and the involvement of patient-powered research networks in the national research infrastructure.
- 2016
Building Trustworthiness in PCORnet conference.
Sharon Terry presents at TEDMED.
White House Precision Medicine Summit.
Genetic Alliance assumes an expanded leadership role in the PCORnet Coordinating Center, coordinating engagement activities, developing shared resources and platforms, and elevating the role of participants in research governance and decision-making.
- 2017
Co-creating a Healthy Future: 30th Anniversary conference.
CEO Sharon Terry’s TEDMED talk, Science Didn’t Understand My Kids’ Rare Disease Until I Decided to Study It, is published by TED in June and featured in NPR’s TED Radio Hour in September, bringing the story of family-led genetic discovery and people-driven research to a worldwide audience.
- 2018
Genetic Alliance convenes a People-Driven Research meeting, bringing advocacy organizations together to advance community leadership in research.
Claritas Genomics adopts Genetic Alliance’s Platform for Engaging Everyone Responsibly (PEER) to share genetic test results with patients.
Genetic Alliance continues to advocate for individuals’ rights and informed consent in the use of newborn screening bloodspots and genomic information.
Genetic Alliance advances a vision of communities as active governors of research, rather than simply sources of participants and data.
- 2019
Genetic Alliance announces a technology partnership with LunaDNA, advancing a model in which individuals retain control over their health information and determine how it is shared for research.
Genetic Alliance and Expecting Health conduct a newborn screening survey to better understand family and community perspectives.
Genetic Alliance supports federal policies on health information interoperability, data access, and preventing information blocking.
Genetic Alliance expands its work to enable cross-condition, community-led registries and research.
- 2020
Genetic Alliance migrates its registry technology to Luna’s platform, creating new opportunities for community-directed research and data sharing.
Genetic Alliance and Luna collaborate on a drug discovery initiative focused on rare epilepsy.
Expecting Health and the EveryLife Foundation conduct the second annual Newborn Screening Bootcamp, strengthening advocacy skills and community engagement.
Genetic Alliance advocates for the Ending the Diagnostic Odyssey Act, seeking to improve access to genomic testing for children.
During the COVID-19 pandemic, Genetic Alliance sustains its advocacy, research infrastructure, newborn screening activities, and support for communities.
As a result of the pandemic, Genetic Alliance closes its DC office and staff works from home all over the country.
- 2021
Genetic Alliance and Illumina announce a $120 million global initiative to expand access to genomic testing and improve outcomes for families affected by genetic disease.
The philanthropic genomic testing initiative iHope is given to Genetic Alliance, establishing the foundation for a global no cost clinical genomics program focused on children facing barriers to diagnosis.
Genetic Alliance advocates for legislation and policies that protect patients, advance data sharing, and support access to diagnosis and care.
Genetic Alliance continues developing community-directed research infrastructure, registries, biobanking, and independent ethical oversight.
- 2022
Genetic Alliance and ClinWiki merge, expanding efforts to make clinical trial information more accessible and useful to individuals and communities.
Genetic Alliance expands its global clinical genomic testing program for children with suspected genetic conditions who lack access to testing.
Genetic Alliance strengthens the integration of person-controlled health data and privacy protections into its research infrastructure.
Many more advocacy organizations launch registries supported through Genetic Alliance’s research ecosystem.
Sharon Terry’s work transforming research through community leadership is featured in PBS’s A Brief But Spectacular Take.
- 2023
Genetic Alliance and Travera announce a partnership to expand access to innovative cancer treatment by connecting patient communities with emerging therapeutic technologies.
Genetic Alliance continues developing cross-condition research infrastructure through its Registry, BioBank, and Institutional Review Board (IRB), enabling communities to initiate and direct research.
Genetic Alliance advances the use of real-world data generated by patients and communities to inform research priorities, clinical studies, and therapeutic development.
Genetic Alliance’s global clinical genomics program continues serving children in resource-limited settings, connecting genomic diagnosis to clinical care.
- 2024
Genetic Alliance expands its global clinical genomics program through partnerships with SickKids, CHEO, Mendelics, and the New York Genome Center, establishing the infrastructure for a distributed international network of clinical laboratories.
Ryan J. Taft and Erin Thorpe, formerly of Illumina, join Genetic Alliance’s executive leadership to accelerate global genomic testing and strengthen clinical implementation.
A landmark study published in the American Journal of Human Genetics (Thorpe, et al.) analyzes clinical genome sequencing in 1,004 individuals with suspected rare genetic conditions across eight countries.
- The study demonstrates a ~50% molecular diagnostic yield in LMIC and changes in clinical management for approximately 69% of evaluated patients.
- The findings establish evidence that clinical genomic sequencing has substantial value in low- and middle-income countries, where access has historically been limited.
- The publication is subsequently recognized among the American Journal of Human Genetics’ notable advances in clinical genomics.
CEO Sharon Terry is appointed a Commissioner of the Rare Diseases International–Lancet Commission on Rare Diseases (2024–2026), working with international leaders to develop evidence-based, equitable recommendations for improving rare disease diagnosis, care, research, and policy worldwide.
- 2025
Genetic Alliance expands its international genomics network, adding nine clinical sites and bringing testing and clinical expertise to additional underserved communities.
The Helmsley Charitable Trust awards Genetic Alliance $500,000 to expand access to clinical genomic testing for children with suspected rare genetic conditions.
Alexion Charitable Foundation provides support for the global genomic testing program, strengthening its ability to reach families experiencing diagnostic delays.
Genetic Alliance advances a distributed laboratory model that combines philanthropic contributions, accredited clinical testing, local clinical expertise, and shared infrastructure.
Genetic Alliance partners with Aretetic Solutions to develop a person-centered data platform that supports enrollment, longitudinal information gathering, and meaningful participation in research.
Work advances on genetic counseling education and new approaches for children whose diagnoses remain unresolved after initial genomic testing.
- 2026
The global genomics program becomes RISE, reflecting an expanded focus on moving from diagnosis to action through clinical care, family support, further investigation of unresolved cases, and research opportunities.
RISE surpasses 4,000 children supported, demonstrating the scale of demand for equitable diagnostic services.
Genetic Alliance welcomes new sequencing and laboratory partners, including PacBio, 3billion, and Dubai Health, expanding geographic coverage and technological capabilities. Number of labs reaches 8.
Additional clinical sites bring the number to 26.
RISE operates in 19 countries.
Jennifer Troyer, formerly a senior staffer at NIH, joins Genetic Alliance as Director of Global Genomics.
Genetic Alliance expands its international laboratory and interpretation network through additional partnerships, including Lucid Genomics, enGenome, and Oxford Nanopore. With Oxford Nanopore, the number of labs reaches 9.
Genetic Alliance is a principal contributor and co-author of the World Economic Forum white paper, Making Rare Diseases Count: How Better Data Can Unlock a Multitrillion-Dollar Opportunity, published February 24, 2026. The report makes the economic and public health case for improving rare disease data infrastructure, accelerating diagnosis, strengthening research, and building more coordinated and equitable healthcare systems.
Genetic Alliance is named one of the four finalists in the “Patient First” award category at the Galien Foundation Forum and Gala.
October 31, 2026: Genetic Alliance launches its 40th anniversary year, celebrating four decades of community leadership, genetic information equity, research innovation, and health systems transformation.