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  1. Advocacy organizations are establishing and managing registries and biobanks are playing a vital role in research. Genetic Alliance has an advocacy-initiated and advocacy-run registry and biobank (Genetic Alliance Registry & BioBank). This is a distinct program from the family health history mentioned above.


    . Genetic Alliance Registry and BioBank: a novel disease advocacy-driven research solution. Per Med. 2011Mar:8(2): 207-13.

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