s1mple life/Shutterstock.com
A disease is considered rare if no more than five out of every 10,000 people are affected by it. However, since there are many rare or “orphan” diseases, the total number of affected people is not small. In Germany, around four million people suffer from such a disease.
Rare diseases are often chronic and progressive, and in many cases life-threatening. A large number of them are genetic. For most rare diseases, there is no causal therapy, although medical measures can improve the quality of life as well as the life expectancy of those affected. Due to their rarity, there are structural, medical and economic reasons why it is difficult to provide medical care to those affected by such diseases and to conduct research to improve diagnosis and therapy.
Against this background, there is a multitude of ethical questions requiring an open and transparent dialogue with the people affected as well as those involved in medical care and research, and society as a whole.
