Information Gathering for Rare Syndromes
Further to the inclusion of the ‘eponyms’ app from Dr Lee’s talk at the recent SPAN/SAG meeting, we would like to direct you towards another online resource with useful information.
Taken from the website: “Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.”
The site is available at: http://www.orpha.net/consor/cgi-bin/index.php
Information about the ‘eponyms’ app is already available with other useful information in the SPAN/SAG menu on the right.