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Advocacy-Led Research

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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 truly leading the research effort, empowered with infrastructure and expertise. The concept of research participants becoming research drivers has been core to our identity since our establishment in 1986. Today, many communities of people and individual citizen scientists conduct their own research and lead international, multi-disciplinary research initiatives. 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.

Genetic Alliance offers a number of practical resources to empower individuals and communities. While the Platform for Engaging Everyone Responsibility (PEER) provides a customizable registry and engagement platform that has been used by more than 45 organizations for everything from natural history studies to patient-focused drug development, the Genetic Alliance BioBank provides a centralized, clinical data registry and sample repository to enable translational research. Finally, the Genetic Alliance Institutional Review Board (IRB) was established to ensure that the appropriate steps are taken to protect the rights and welfare of the people participating in community-led research and studies.

Freely sharing discoveries? Advancing science for more than one condition? Genetic Alliance joined with the University of North Carolina and the international Structural Genomics Consortium, and launched UNC Catalyst to recruit, train, and fund research scientists. These scientists create the tools needed to study the physical effects that genetic mutations have on the body and create frameworks for designing a new treatment. To magnify and accelerate the impact of this initiative, researchers across the globe will have unrestricted access to the research tools generated by UNC Catalyst. We are delighted to work with these partners to change the paradigm of science.

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4301 Connecticut Ave NW, Suite 404, Washington DC 20008-2369 | Tel: 202.966.5557 | Fax: 202.966.8553 | EIN 52-1571905

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