Getting Needs onto the Research Agenda

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The most electrifying development in advocacy organizations for medical conditions is participating in, initiating, focusing and conducting research. Where organizations once met only to share tips and provide moral support, now they are lobbying Congress for increased appropriations, publishing standards of care for the conditions they support, and working directly with physicians and scientists to design, populate, and report on studies. With this shift, advocacy organizations have developed a powerful potential to make a significant, positive impact on knowledge about their members' conditions, the availability and efficacy of treatment, and corporate and government policies.

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