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See what others have to say about Genetic Alliance in this list of news articles, videos, talks, and more from external sources around the world. 


April 14, 2021- PIPC Joins Over 80 Patient and Disability Groups Urging Policymakers to Reject Policies That Discriminate


December 18, 2020- Sharon Terry, Genetic Alliance: Data and power to the people

November 6, 2020- The EveryLife Foundation in Partnership with Expecting Health at Genetic Alliance Wrapped the Second Annual Newborn Screening Bootcamp

May 18, 2018- The Rogue Experimenters

May 18, 2020- LunaPBC, Genetic Alliance create drug discovery platform for rare epilepsy

May 8, 2020- From Competition To Sharing: How Her Children’s Rare Disease Led Sharon Terry To Revolutionize Medical Research

April 17, 2020- Covid-19 Stalls Clinical Trials for Everything but Covid-19


April 4, 2019-  NBS Survey From Expecting Health & The Genetic Alliance

January 22, 2019-  LunaDNA, Genetic Alliance to Merge Technology Platforms


October 25, 2018- Questions for Sharon Terry, Genetic Alliance- PMWC 2019 Honoree

October 5, 2018- ACMG awarded five-year, $13 million contract renewal to continue newborn screening efforts

October 3, 2018- Celiac Disease Foundation Attends Genetic Alliance People-Driven Research Meeting

September 21, 2018- Your Genetic Data Is The New Oil. These Startups Will Pay to Rent It

July 18, 2018- La extraordinaria historia de Sharon Terry, el ama de casa que descubrió y patentó el gen del pseudoxantoma elástico, la enfermedad rara de sus hijos

June 13, 2018- Claritas Genomics Adopts Genetic Alliance’s PEER Platform for Patient Results Sharing

April 12, 2018- Lawsuit alleges Michigan stole blood of newborn babies

April 12, 2018- Federal Lawsuit claims Michigan stole blood of newborn babies

April 10, 2018- The Emerging World of Online Health Communities

March 19, 2018- Luna DNA Expands Leadership and Advisory Board, Adding New Pedigree From Illumina

March 1, 2018- NIH Panel Puts Emphasis on Importance of Collaboration in Rare Disease Research

February 27, 2018- BioNews to Cover 3 Rare Disease Day Events, Including NIH Conference

February 9, 2018- Parents Sue Michigan Over Database of Baby Blood Samples

January 19, 2018- Claritas Genomics Shuts Down Operations


September 29, 2017- Sharon Terry: When Siblings Get A Rare Diagnosis, Can Their Parents Find The Cure?

June 24, 2017- Genetic Alliance Joins Oracle Network in Effort to Facilitate Clinical Trials

June 12, 2017- Venture Philanthropy Straddles Two Worlds

May 4, 2017- Southwest Pennsylvania Environmental Health Project tracks fracking-related illnesses with new registry

May 1, 2017- Registry will study health impact from living near shale gas wells

April 26, 2017- Fixing the Genetic Information on the Internet

April 7, 2017- FDA Approves Marketing Of Consumer Genetic Tests For Some Conditions

March 21, 2017- What Your Family Tee Can Tell You About Your Health

March 21, 2017- 87 Advocacy Groups Send Letter to Congress to Save Medicaid

March 10, 2017- GINA Supporters Concerned House Bill Undermines Genetic Non-Discrimination Law

February 27, 2017- Rare Disease Day at NIH event features advances in rare disease research

February 14, 2017- Human Gene Editing Receives Science Panel’s Support

January 12, 2017- UNC Initiative to Create “Tools” for Studies of Rare Diseases, Train Researchers

January 6, 2017- UNC Catalyst initiative aims to create, share tools to fight rare diseases


July 26, 2016- Thanks to Social Media, Rare Progress on Rare Diseases

May, 2016- Thirty Years of Transforming Healthcare

March 31, 2016-Women's History Month Profile: Natasha Bonhomme

March 3, 2016- Social Entrepreneurship and Innovation


May 14, 2014- Exclusive Interview with Sharon Terry on her personal entrepreneurship, Cultural Entrepreneurship Institute Berlin

July 1, 2014- In Genetic Haystacks, We're All Needles

June 18, 2014- Incorporation of Patient Perspective on Disease and Treatment Options Critical in Drug Development and Review


November 15, 2013- Free the Data's first move: Opening data for breast cancer research

November 11, 2013- Advocacy groups crowdsourcing patient views on risk-benefit of drugs

November 6, 2013- 3 neat ways to participate in crowdsourced cancer and Alzheimer’s disease research

November 4, 2013- Genetic Alliance & PhRMA Announce Pilot Initiative to Advance Patient-Focused Drug Development

June 24, 2013- Genetic Alliance Selects Oracle Health Sciences Network to Help Patients Gain Access to Clinical Trials


Levenson, Deborah. Genetic alliance marks 25 years. (2011). American Journal of Medical Genetics, 155A(12), ix-x.

Terry, S. F., Horn, E. J., Scott, J., & Terry, P. J. (2011). Genetic Alliance registry and BioBank: A novel disease advocacy-driven research solution. Personalized Medicine, 8(2), 207-213.


Reed, K., Weaver, M., Chappelle, A., Furlong, P., Clapp, K., Miller, R., . . . Terry, S. F. (2009). Who said it? When did they say it? How did they know? Deciding when to trust or trash genetics health information. (poster). 59th Annual Meeting of the American Society of Human Genetics., (October).

Sidler, M., & Jones, N. (2009). Genetics interfaces: Representing science and enacting public discourse in online spaces. Technical Communication Quarterly, 18(1), 28-48. doi:10.1080/10572250802437317.


Zimmermann, J. (2007). Report on the genetic alliance summit. Genetic Testing, 11(4), 477-479.


No genotype left untreated (2004). Nature Publishing Group. doi:10.1038/ng0504-429.


Larkin, M. (2001). Genetic variation creatively celebrated. Lancet, 358(9278), 341.


Weiss, J., Davidson, M. E., & Asch, A. (2000). Objectives and activities of the genetic alliance. American Journal of Public Health, 90(9), 1477-1478.

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