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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.

I recently started working for my organization. How can I become an editor of my organization’s page on Disease InfoSearch?

1. Sign in or create an account.

*We recommend using a general email for your organization instead of a personal email when creating an account (i.e. “info@____.org”) to circumvent future difficulties with change of staff

2. Go to “List an Organization”.

3. Search the organization, and click the grey “Request Access” button to the right of your organization’s name.

4. The organization’s existing primary editor(s) will be notified and must approve your request. If your editor is no longer part of your organization, please contact us at support@diseaseinfosearch.org. 

5. When they approve, you will be notified via email.

How to approve an additional editor of my organization’s page on Disease InfoSearch?

*Only Primary Editors may approve editor requests. 

1. If an individual requests to be an editor, existing editor(s) will be notified via email.

3. Click link in email or go to dashboard in Disease InfoSearch.

4. Click on “Pending”, then “Accept” or “Reject”. You may choose to make them a Primary Editor, which gives them permission to approve future editors.

I have requested to become an editor of my organization’s page, but the previous editors do not work for my organization anymore. How do I receive approval for my request?

Contact us at support@diseaseinfosearch.org to let us know that you made a request, and we will approve it.

I was asked to update my organization’s listing on Disease InfoSearch, but my organization is already up-to-date.

Sign in to Disease InfoSearch, and click on “Welcome” in the upper right corner. Scroll down and click on your organization’s name under “My Organization Listings”. Then check the box indicating your information is updated.

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 at support@diseaseinfosearch.org 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 at support@diseaseinfosearch.org with your concerns.