April 15, 2006 (Vol. 26, No. 8)
URL:
http://www.raredisease.org
Rating:
Strong Points: Vast database
Weak Points: Unclear focus
Summary:
The National Organization for Rare Disorders (NORD) is an organization with a title that provides no surprises. NORD hosts a database with information on over 1150 diseases that can be accessed in the free version (reviewed here) or in a subscription version that has more extensive reports. What I saw of the free site merited mention. Diseases are organized in hyperlinked fashion in an alphabetized index. Clicking on a disease name brings up the disease record containing data, including alternate names, subcategories of the disease, discussion, and links to organizations providing support relative to the disease. The site is a bit confusing in its aim, with technical descriptions apparently aimed at physicians and links to support sites aimed at patients and their families. While this spans quite a wide range of expertise, the upshot is that the needs of neither group is fully served, at least at the free site.
