Terms and Conditions

Managing Information about an Organization

A designated contact from each organization controls an organization's information and can update it at any time or remove the organization from the Disease InfoSearch database.

Messages from Genetic Alliance

Organizations will not receive unsolicited email from Genetic Alliance. However, by registering an organization, you agree to receive these emails:

  • Listing Currency: an email every 6 months to check to see if your organization's information is current.
  • New Fields: an email when we add or remove fields in our database that change the information shown on the site for organizations.
  • New Features: an email when we add or remove features of the website that affect organization and disease listings.
  • Password Reset: an email when you request a password reset.

Listing Currency

It is an organization's responsibility to maintain their listing and ensure that the information is accurate. We send a reminder to check the information every 6 months. After 12 months without confirming information, we will deactivate the organization's listing and it will no longer show up under its related disease listings. To reactivate the listing, contact the Disease InfoSearch program staff.

Disease Listings

Organizations can provide and edit a description for their associated diseases. In the case that more than one organization is associated with a disease, each one can edit the description. If there is a disagreement about the description's content, the involved organizations should first contact each other and see if they can work out a mutually acceptable description. If not, then they should contact the Disease InfoSearch program staff.

Links outside Disease InfoSearch

Genetic Alliance is not responsible for the content of web pages linked to outside this site. Apply critical thinking, check multiple information sources, and consult with a health professional before making treatment decisions. For more information see http://www.trustortrash.org.