The role of religious beliefs, practices, and metaphors in the coping strategies of rare disease patients in Romania

Abstract

Most rare diseases are chronic and some are life threatening, and as a consequence their impact on the lives of patients and their families is significant. Also, rare diseases are really not that rare. Some studies have estimated that as many as 25 million North Americans and 30 million Europeans are affected by one of the 5,000-6,000 types of rare diseases identified by that time, most of which are of a genetic origin (Haffner et al., 2002; Haffner, 2006). In Romania, unofficial reports suggest that around 1,300,000 individuals suffer from rare diseases (approx. 6-8 percent of the entire population), many of whom are lacking a correct diagnosis or adequate treatment and care (National Plan for Rare Diseases in Romania 2010-2014).