Rare As One Partner

Genetic Alliance

Genetic Alliance transforms systems, dissolves boundaries, and promotes health for individuals, families, and communities. Patients and their families need and deserve opportunities to be active participants in their health, whether through traditional health services or groundbreaking research endeavors. That’s why Genetic Alliance builds and deploys tools that advance the capacity of rare disease communities and other patient advocacy organizations to serve their members.

For Genetic Alliance, advocacy means more than research conducted with participants at the table. It means that the people—groups of patients and activated communities—are leading the research effort, empowered with infrastructure and expertise. Ever since Genetic Alliance was founded in 1986, the concept of research participants becoming research drivers has been central to the organization’s identity.

Genetic Alliance’s tools, partnerships, and projects build capacity in communities, enable new cross-sector partnerships, and place control in the hands of the people, empowering them with a greater sense of ownership over their health data.