Genetic Alliance

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

Genetic Alliance is the world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.

Genetic Alliance’s network includes more than 1,000 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations. The network is a dynamic and growing open space for shared resources, creative tools, and innovative programs.

iHope Genetic Health
iHope™ Genetic Health is a program that diagnoses the undiagnosed across the globe. We address a desperate need to make genomic medicine available to all individuals regardless of their social status, income, or geographic location.

Institutional Review Board
Genetic Alliance’s Institutional Review Board fosters research and discovery through a people-centered approach to reviewing research protocols. Under Genetic Alliance’s IRB, protocols are reviewed with an eye for harm and burden to a participant, without the authoritative paternalistic regulation of other institutions. We value protecting people by ensuring that review occurs in a timely manner, with low costs and minimal restrictions.

BioBank
The Genetic Alliance BioBank provides communities and organizations the infrastructure needed to collect, archive, and distribute all types of biospecimens.

Registry
The Promise for Engaging Everyone Responsibly (PEER) is a unique, award-winning technology solution for collecting health data directly from individuals. The platform—designed to accommodate any data sharing and privacy preferences—gives individual users complete control over how their data is shared and used for 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.

Disease InfoSearch
Are you looking for disease or condition information, news, and support all in one place? Disease InfoSearch is the right place to start! Disease InfoSearch locates information from a database of more than 10,000 conditions and from thousands of partners.