Has it been a while since you’ve updated your organization’s Disease InfoSearch listing or explored any of the new Genetic Alliance tools?
Genetic Alliance believes people should have access to quality, up-to-date information about genetic conditions, and we know you do too. This page will guide you through a couple of steps to make up to date information about your organization easier to find. Once people find you, we have some tools to make sure you’re providing quality and accessible information.
Disease InfoSearch, an online search tool and database, is a compilation of information on advocacy organizations and genetic conditions provided and vetted by disease-specific advocacy organizations. Healthcare providers and individuals looking for information about specific conditions often search the database, so an up-to-date listing will help people find you.
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View this webinar to learn more about the three components of Disease InfoSearch: advocacy organization listings, condition-specific links, and the portal into the National Library of Medicine’s resources. |
To update your listing: 1.Click “Sign in” at the top of this web site. 2.Enter your User ID and password. 3.Click the “Edit my organization” tab. 4.Scroll through the fields to review your information and make any necessary updates. If there are no changes, please click the box next to “I have reviewed my listing and there are no updates to be made at this time.”
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One of the main services advocacy organizations offer to their members is providing quality and accurate information about a condition as well as helping people sort through health information found from other sources.
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Help ensure your organization’s materials are of the highest standards by creating or updating them with the assistance of the developer’s version of the Trust It or Trash It? tool. Your members may have many places they find information other than your organization. Encourage them to use the Trust It or Trash It? tool to critically evaluate health information.
Interested in having the Trust It or Trash It? tool on your website? To find out how, watch this short video.
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For more information on the Access to Credible Genetics Resources Network, the program that created this tool, please visit www.geneticalliance.org/atcg
