Ethics Council calls for fairer care for people with rare diseases

30.11.2018 11:33

In its ad hoc recommendation published on November 23, 2018, the German Ethics Council draws attention to the specific vulnerability of people with rare diseases. He calls for a number of measures to protect those affected from inadequate care. Your goal must be the fair consideration of their needs in clinical research and healthcare.

According to the German Ethics Council, anyone who is one of the four million people in Germany with a rare disease is often confronted with a variety of problems. From incorrect or delayed diagnosis to the psychological stress caused by experiences of isolation or poor care when specialist facilities are missing or difficult to access.

The Ethics Council therefore considers it urgently necessary to improve medical care for people with rare diseases and to promote their opportunities for participation.

The poor supply situation for people with rare diseases should be addressed in a first step through improved training, further education and training within the health professions. Medical students, doctors and other health professionals should be made aware of the specific problems in the diagnosis, treatment and prevention of rare diseases. In addition, according to the German Ethics Council, sick people need access to specific and age-appropriate training programs, which should be seen as part of the overall therapeutic concept and, as such, financed by those who pay for health care. The Ethics Council also recommends that certified centers for rare diseases be set up nationwide and adequately funded. They should enable multi-professional care and act as a guide in the healthcare system for those affected. Because of the small number of those affected, clinical research into rare diseases must also work in a cross-border network.