It is estimated that there are six to ten thousand rare diseases. The trend is increasing due to advanced diagnostics - which also applies to the number of people affected.
A disease is considered rare if fewer than 5 in 10,000 people are affected. Cystic fibrosis (CF) is one of the rare diseases with the widest distribution - with 70,000 to 100,000 people affected, around 8,000 of them in Germany.Ultra Rare Diseases
Other diseases are so rare that "one in a million" actually applies. In very rare diseases, the prevalence is less than 20:1,000,000.
Measured in terms of the number of inhabitants, this would be around 1,660 people affected in Germany alone!
The Eva Luise and Horst Köhler Foundation for People with Rare Diseases fight every day to help rare disease patients as quickly as possible. This mission is driven by our most important principle: No one left behind!