Educating people with rare rheumatological conditions

Patients deserve better

A disease is considered to be rare if it has a population prevalence of < 5 in 10 000 [1]. Approximately 80% of rare diseases are genetic and present in childhood. The remaining 20% are acquired and present in adulthood. There are a number of rheumatic conditions that fall into this category, including most of the vasculitides and many of the connective tissue disorders. Rare diseases pose numerous educational challenges to both health-care professionals and patients; these can include ignorance of the condition among health-care professionals and patients, or relatives and friends who may never have heard of the condition. This leads to social and informational isolation because the patient has no one to turn to for advice. Increasingly, patients are turning to internet websites and chat rooms for advice, and some of these may be of poor quality