Caring and Curing by Mixing Information and Emotions in Orphan Diseases Websites. A Twofold Analysis

The study reported in this article was structured as a first step in planning guidelines to design effective internet sites for Associations dealing with rare diseases. The Authors used a two-stage analysis: first, they carried out an analysis of the websites of a sample of Italian Associations on rare diseases and then they did an interview Survey to identify the objectives and needs of those organizations. Results indicate that two different kinds of organizations do exist and suggest possibilities for developing guidelines aimed at improving their websites.