FAQs about Disease InfoSearch

What is Disease InfoSearch?

Disease InfoSearch is an online, information database for over 10,000 conditions that informs and supports individuals and family members affected by these conditions. The site provides disease descriptions, support organization listings and resources for additional information.

Originally a printed directory, Genetic Alliance moved Disease InfoSearch onto its website, geneticalliance.org, in 2005 to increase its accessibility and to allow crowdsourcing of information from support groups and foundations. DiseaseInfoSearch.org was launched in 2013 as a standalone website and featured expanded information about diseases with improved user interface. The current website includes curated and crowdsourced disease descriptions, support organization listings, and resources. In addition, it aggregates links to informational websites, journal articles, and clinical trials.

What types of organizations can be included?

Listed organizations are typically nonprofit and serve one or more conditions through support, advocacy or research. Listing is free, but each group must maintain its own listing and keep the listing up-to-date.

Why don't I see my organization listed? I just filled out the information.

Before an organizational listing appears on the website, it is reviewed by a Genetic Alliance staff member. This step ensures that Genetic Alliance understands and validates the organization before publishing its information. Typically, listings will be published within five business days of submission.

The form asks for lots of information! Do I have to submit it all at once?

Information can be submitted over time. We continue to add fields to the listing form to include information that individuals often seek or request. Only fields marked as ‘required’ are mandatory; the rest are optional. However, we encourage you to fill out as many fields as possible to give individuals the most complete information about your organization.

Why isn’t the disease my organization supports listed?

Considering the 7,000+ rare diseases, it is possible that we do not yet have a page for your disease. Please contact us if you cannot find your disease, and we will work on making a page. Additionally, please consider searching for your disease using a different name if it has one.

What if the information on the disease page is not accurate?

If the information on a disease page is not accurate, we would love to hear your feedback and suggestions to improve our website! Please contact us with your concerns.