FAQs about Disease InfoSearch

What is Disease InfoSearch?

Disease InfoSearch is an online database of information about conditions and the groups that serve the individuals and family members affected by these conditions. It's a resource for individuals looking for more information!

What types of organizations can be included?

Nonprofit advocacy and support organizations that serve conditions - whether one or multiple - are included. The groups currently listed focus their work in different ways from research to education to support efforts for various conditions. There's no cost to be listed, but each group is responsible for maintaining their own listing and keeping the listing up-to-date.

Why do I need to create an account through the Genetic Alliance portal?

All of Genetic Alliance's websites, including Disease InfoSearch, now use a centralized login system, the Genetic Alliance portal. This makes it easier for you, as you only have a single username and password to remember!

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

Before an organizational listing is made live on the site, it is reviewed by a Genetic Alliance staff member. This allows us to ask any questions to help us understand your organization before publishing the information. Typically, listings will be published in five business days or less after creation.

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

As we continue to add fields to capture the information we are often asked about, the number of fields has grown! You do not need to complete all of the information at once. The only required fields are marked as "required" in the form. However, we encourage you to fill out as many fields as possible to help individuals get the full picture of what your organization offers. It may be filled out over time.