BACKGROUND Rare diseases are a global public health concern, affecting an estimated 350 million individuals. Only 5% of approximately 7000 known rare diseases have a treatment, and only about half have a patient advocacy organization. Biopharmaceutical companies face complex challenges in developing treatments for rare diseases. Patient advocacy organizations may play a major role by positively...

The revision of the Diagnostic and Statistical Manual of Mental Disorders (DSM) provides a useful opportunity to revisit debates about the nature of psychiatric classification. An important debate concerns the involvement of mental health consumers in revisions of the classification. One perspective argues that psychiatric classification is a scientific process undertaken by scientific experts ...

THE TERM advocacy has appeared in nursing literature for almost two decades (Hewitt 2002, Mallik 1997). Much of the literature has attempted to legitimise and encompass patient advocacy in the role of the nurse. However, reservations about the suitability of the nurse to act as patient advocate have also been expressed (Allmark and Klarzynski 1992, Copp 1986, Walsh 1985). Advocacy first appeare...

BACKGROUND During the two recent decades, advocacy has been a topic of much debate in the nursing profession. Although advocacy has embraced a crucial role for nurses, its extent is often limited in practice. While a variety of studies have been generated all over the world, barriers and facilitators in the patient advocacy have not been completely identified. This article presents the findings...

It remains unclear what patient advocacy actually entails and what values it ought to embody. It will be useful to ascertain whether advocacy means supporting any decision the patient makes, or if the advocate can claim to represent the patient by asserting well-intentioned paternalistic claims on the patient's behalf. This is especially significant because the position of advocate brings with ...