Disease InfoSearch

Information updated on Tuesday, March 25th 2025, 11:33
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Genetic Alliance is currently in the process of rebuilding Disease InfoSearch to better serve the public. We are actively looking for partners to join us in funding this next iteration.

About Disease InfoSearch

Disease InfoSearch serves as a resource for curated and crowd sourced disease information to help individuals access quality and credible information. In addition, Disease InfoSearch connects individuals to support organizations and avenues to participate in research. On Disease InfoSearch, information is aggregated from a variety of resources including journal articles, clinical trials, and news and events. All disease descriptions are from websites including Mayo Clinic, Healthline, NIH sites, Genetic Home References, Orphanet and Web MD or written by Disease InfoSearch and reviewed by a genetic counselor.

Beginning as a printed directory, Disease InfoSearch was added as a feature to the Genetic Alliance website in 2005 to make it a more accessible tool for mass sharing of disease support group information. In 2013 it was further transformed, and became a standalone websites with more extensive information about diseases. Over time, Disease InfoSearch expanded to include greater crowd sourced disease descriptions, listings of support organizations, and other resources such as links to websites, journal articles, ways to participate, news and events, and clinical trials.

Disease InfoSearch was developed through a grant from the Leona M. and Harry B. Helmsley Charitable Trust and through federal grants from Health Resources and Services Administration.