Sorry, you need to enable JavaScript to visit this website.

Sign Up For Mailing List Button

Donate to Genetic Alliance

Disease Search Button


Facebook icon
Google+ icon
Twitter icon
LinkedIn icon icon
Digg icon

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. 


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.

Twitter icon
Facebook icon
LinkedIn icon
Google+ icon
YouTube icon
RSS icon

4301 Connecticut Ave NW, Suite 404, Washington DC 20008-2369 | Tel: 202.966.5557 | Fax: 202.966.8553 | EIN 52-1571905

Except where otherwise noted, content on this site is licensed under a Creative Commons Attribution 3.0 License.