Rare diseases and patients associations websites: Informative and affective virtual places for bidirectional communication exchange

Rare diseases are often chronic and life-threatening disorders characterised by a low occurrence among the human population. However, around 30 millions people suffer from a rare disease in the European Union since there exist 5,000 to 7,000 different types of rare diseases all over the world. Frequently they impair the patients’—and their families’—quality of life. In these cases the most impressive problems for patients and clinicians are linked to the unavailability of information about the pathologies and a lack of scientific and biomedical research; moreover, since the low level of profitability for the major pharmaceutical companies, research about specific drugs and their development and production is almost absent. Consequently, proper or early diagnoses are uneasy, and adequate care and treatments are unlikely to be delivered. This is why rare diseases are also frequently defined “orphan diseases”.