Providing the Tools for Citizen and Community-Led Science—Sharon Terry—Genetic Alliance

There are approximately 10,000 known diseases affecting modern humans—about 7,000 of which are rare, and about 3,000 more which are common.

Each and every one of us is susceptible to developing or contracting a disease at any point in our lives, and most of us will. And once we do, then what? Where will the resources be?

The team at Genetic Alliance is working to make those resources comprehensive and easily accessible by the community in the form of biobanks containing tissue and blood samples, information on the progression of diseases, data on treatment methods and drug therapies, and statistics correlating phenotypic and genotypic traits. They are a 32-year-old non-profit initially established to help other non-profit disease advocacy groups work efficiently and effectively, but over the years they have worked increasingly toward creating and raising awareness of the benefits of disease registries and biobanks.

Not only do they allow individuals to decide the way in which their data will be used, but they are making it easier than ever before to share that data by providing non-profit advocacy groups with free sample collection kits.

Sharon Terry, CEO of Genetic Alliance, joins the podcast to discuss all of this and more, including large-scale genome sequencing, the stratification of drug therapies, FDA interest in various gene therapy/editing registries, and at least one aspect of Genetic Alliance’s mission that doesn’t sit well with some academic institutions.

Search for information on any of the 10,000 diseases by visiting diseasinfosearch.org, and learn more about Genetic Alliance by visiting geneticalliance.org.

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