News
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.
2023
May 25, 2023 - Travera and Genetic Alliance Join Forces to Expand Access to Innovative Cancer Treatment
February 20, 2023 - The Impact of Ending the AmazonSmile Program on Nonprofits
February 10, 2023 - Real-World Data: The Secret Sauce for Rare Disease Research?
2022
August 10, 2022 - Making Genomic Testing Available To All—And Safeguarding People’s Control Of Their Health Data
July 8, 2022 - A Brief But Spectacular take on revolutionizing research
March 8, 2022 - The Recurrent Pregnancy Loss Association Launches RPL Community Registry
January 25, 2022- Genetic Alliance welcomes Julia Ortega to the team specifically to lead the iHope Genetic Health program.
January 25, 2022- Genetic Alliance and ClinWiki are excited to announce that the two organizations have merged.
2021
November 23, 2021- Genetic Alliance is delighted to announce that Susan McClure and Sam Solomon have joined the Genetic Alliance staff. With a variety of skills, they bring a breadth and depth of expertise critical to Genetic Alliance’s mission, growth, and communications.
November 16, 2021- Illumina and Genetic Alliance Launch $120 Million Global Initiative to Increase Equity and Improve Outcomes for Families Impacted by Genetic Disease
April 14, 2021- PIPC Joins Over 80 Patient and Disability Groups Urging Policymakers to Reject Policies That Discriminate
2020
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
2019
April 4, 2019- NBS Survey From Expecting Health & The Genetic Alliance
January 22, 2019- LunaDNA, Genetic Alliance to Merge Technology Platforms
2018
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
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
2017
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
2015
July 8, 2015 - FACT SHEET: New Patient-Focused Commitments to Advance the President’s Precision Medicine Initiative
June 23, 2015 - Claritas Genomics Adopts Genetic Alliance's PEER Platform for Patient Results Sharing
February 21, 2015 - Alzheimer's Disease Research Summit 2015: Expanding the Horizon
2016
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
February 9, 2016 - AliveAndKickn, a hereditary cancer foundation, announces the launch of The HEROIC Registry for Lynch Syndrome genetic mutations
2014
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
2013
December 9, 2013 - Sanofi US Launches Second Innovation Challenge: Collaborate | Innovate
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
2011
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.
2009
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.
2007
Zimmermann, J. (2007). Report on the genetic alliance summit . Genetic Testing, 11(4), 477-479.
2004
No genotype left untreated (2004). Nature Publishing Group. doi:10.1038/ng0504-429.
2001
Larkin, M. (2001). Genetic variation creatively celebrated . Lancet, 358(9278), 341.
2000
Weiss, J., Davidson, M. E., & Asch, A. (2000). Objectives and activities of the genetic alliance . American Journal of Public Health, 90(9), 1477-1478.