The situation of rare skin diseases in Germany

In Germany a disease is considered to be "rare" when its prevalence is less than 5:10,000. However, as far as genetic skin diseases are concerned, they are often much more uncommon with a prevalence in the range of 1:100,000. Currently considerable deficits prevail in both diagnosis and treatment of rare skin diseases. Driven by scientific research on rare skin diseases and benefiting from start-up grants of the Federal Ministry for Education and Research (BMBF), the following networks for rare skin diseases were formed: a) epidermolysis bullosa, b) ichthyosis and related keratinisation disorders, c) systemic scleroderma. From a scientific point of view these networks are very successful, they publish in high impact journals and at the same time developed into national centres of reference for the respective disease groups, although formally this status does not exist in Germany. Thus, the 5 year start-up grants considerably improved the clinical care for these three skin disease groups. However, now we are confronted with the threat that the newly formed structures will be difficult to maintain, due to lack of adequate financing. In contrast to France, Germany does not have a "national plan for rare diseases" - probably because the federal structure in Germany is difficult to reconcile with "national plans" In France the situation of clinical care for rare diseases is permanently restructured by the establishment of official national reference centres and by allocation of additional financial means to fulfill these national tasks. In our view, a similar approach is also necessary in Germany.