The task of finding and recruiting sufficiently large cohorts for studying genetic diseases has up to now been a needle in the haystack problem. This is rapidly changing as Sharon F. Terry, and her colleagues at Genetic Alliance are making possible aggregation of individual health information in ways and on a scale never seen before. In the process, they may play an unprecedented role in speeding up drug discovery while enabling individuals to have more ownership of and participation in their own health.
Terry heads Genetic Alliance, an organization composed not only of more than 1,200 disease-specific health advocacy organizations, but another 8,000 or so university, government, and private sector groups. Having such a large number of organizations working together may soon make possible research that up until now would have been impossible.
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