BioTrust holds the space for individuals, families, and communities to participate in translational research. The revolution in health will only happen in a trust environment with people at the heart of it. BioTrust examines and creates policies, and provides novel tools for participants to actively engage in research. The BioTrust Ethics Team, together with the Genetic Alliance Institutional Review Board, provides oversight.
Advocacy, Education & Empowerment
With better health as the goal, Genetic Alliance puts genetic and genomic information into context for individuals and families. Our tools increase access to services and provide the information people need, when they need it. From family health history to whole genome sequencing, our combination of accessible, culturally competent print and web resources, multimedia, and health information technologies empower people to make healthy decisions.
Engaged families are informed, educated and have access to information and services when they need them most. If you are planning a family or advocating for your child, Expecting Health meets a critical need in the health delivery landscape. We have tools that lead to more informed decision-making, educate consumers around appropriate testing and public health services, and help individuals navigate the complex health care delivery system.
Learn about internship opportunities at Genetic Alliance during the fall, spring, and summer!
Disease InfoSearch is a resource for patients, clinicians and researchers.
A place to learn about all the ways genetics is a part of your life.
It’s time to take control of our health! Come together to Free The Data.
Find resources on advocating for accessible communities with Advocacy Atlas!
The Dandy-Walker Alliance supports and advocates for families, while also assisting researchers studying Dandy-Walker Syndrome.
Building online health and wellness communities for patients and caregivers
Learn all you need to know about Newborn Screening.
Stay Up To Date with News, Action Steps, Meetings & More!