Patients Face Long and Difficult Path to Diagnosing Rare Diseases

With over 8,000 rare conditions identified, many patients endure years of uncertainty and limited treatment options.

Rare diseases affect up to 5 in 10,000 people, with over 30 million individuals impacted across Europe and 4 million in Germany alone.
The diagnostic process for rare diseases can take an average of five years, with some cases remaining unresolved for decades.
Only 3% of rare diseases have approved treatments in Germany, leaving most patients without effective medication or therapies.
Centers for rare diseases, such as the one in Homburg, assist patients with undiagnosed conditions, but only about a third of cases result in a conclusive diagnosis.
The Eva Luise and Horst Köhler Foundation advocates for increased research funding to address the lack of treatments and improve care for rare disease patients.