Our Goal

To transform health systems to respond to what people need most.

Genetic Alliance, a non-profit organization founded in 1986, is a leader in deploying high tech and high touch programs for individuals, families, and communities to transform health systems by being responsive to the real needs of people in their quest for health.

"What an amazing article! I'm sharing it all over our social media right now and adding it to my "evidence FOR" stack as we build our registry".

Leslie Edwin
President
Cushing's Support & Research Foundation

I wanted to offer ASHG’s congratulations and thanks for your powerful story on the PBS NewsHour “Brief but Spectacular” series! Of course, the human genetics, policy and patient advocacy communities know well your decades-long commitment and leadership on research innovation and access…Thank you again!

Mona V. Miller
Chief Executive Officer
American Society of Human Genetics

PBS Newshour

2021 Advocacy Award

Francis Collins, MD, PhD, and Diane Baker introduce the 2021 ASHG Advocacy Award recipient, Sharon Terry, MA.

Our Programs

BioBank

The Genetic Alliance BioBank provides the infrastructure needed to collect, archive, and distribute all types of biospecimens. Our model allows us to offer exceptional and cost-effective biorepository services to nonprofit communities and organizations.

IRB

A founding member of SMART IRB, a platform that provides resources for multisite research and helps institutions adopt the NIH Single IRB review policy, Genetic Alliance’s Institutional Review Board offers advantages such as lowers costs, fast turnaround times, and user-friendly templates for IRB approval.

Registry

An award-winning registry platform allows communities to quickly and efficiently build registries and design studies. Powered by Luna technology, the platform operates in compliance with international and domestic privacy regulations to empower individuals, families, and communities to contribute their health data for participant-driven research.

Registry Bootcamp

RegistryBootcamp.org offers advocates, advocacy organizations, and other community groups the information and strategies needed to launch and manage an impactful registry. Whether you are looking for an introduction to registries, a deep dive into a specific sub-topic, or a practical guide, this site has something for you.

Support for Communities

Genetic Alliance helps organizations and communities cultivate a supportive environment and do the research their community needs.

Support for Your Staff and Community

Take time to cultivate, culture, support, and growth.

IRB Protocol Writing Support

Create effective research protocols for your next IRB submission.

Biobanking Support

Build a successful biobank for your community.

Our Tools

Disease InfoSearch

NETS

WikiAdvocacy

Advocacy ATLAS

Genetic Alliance Network Announcements

Periodically, Genetic Alliance will alert you to important action items, announcements, and deadlines, including Genetic Alliance-specific material as well as information from the genetics, health, and advocacy communities. Some weeks there will be no emails; other weeks one or more might be sent to the list.

Community Forum Discussion

Being a part of the Genetic Alliance network gives you access to valuable online meeting spaces that provide an opportunity to discuss as a virtual community.

Genetic Alliance is registered as a 501©3 nonprofit organization. Contributions to Genetic Alliance are tax-deductible to the extent permitted by law. Our tax identification number is 52-1571905.