Getting Your Needs onto the Research Agenda
The most electrifying development in lay groups for medical conditions is participating in initiating, focusing and conducting research. Where support groups 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, lay advocacy groups 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.
» Educating Your Membership about Research
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Maintained by the Genetic Alliance.
The Interactive Guide to Advocacy Groups was written by Sharon Fontaine Terry and Caitlin Burke, with contributions from Genetic Alliance members. The Interactive Guide to Building Advocacy Groups is made available under a Creative Commons license. You may make and share copies of this work for noncommercial purposes without modifications and with this acknowledgement included in full. More information is available at About the Interactive Guide to Building Advocacy Groups.
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SEPTEMBER 2004: This is a preliminary installation of the Interactive Guide to Advocacy Groups. We need your feedback. Make comments on specific pages (you may see error messages, but comments should still post), or send email. Is something missing? Can we make it easier to navigate? This Guide will change regularly over the next few months as we incorporate changes and fine tune the site. Thank you!