What do you do if you are diagnosed with a condition your doctor has not come across before. If you are a health care provider how do you deal with such a patient?
About one in 17 people will develop a rare condition at some point in their lives. Because many rare conditions are currently incurable, some guidelines may be helpful to patients, their families, and care givers. It is worth being aware of some potential pitfalls and how to avoid them.
This short BMJ essay, written by a patient with a rare disorder, offers encouragement for overwhelmed doctors and frustrated patients: Download Healthy approaches to rare conditions