Getty Images | Chinnapong
Berlin Centre for Rare Diseases bundles expertise
In Germany alone, about 4 million people are living with a rare disease. A disease is considered rare if it affects no more than 1 in 2000 people. Although each individual disease is rare, the total number of people affected is high due to the large number of such diseases. At the Berlin Centre for Rare Diseases (Berliner Centrum für Seltene Erkrankungen - BCSE) at Charité - Universitätsmedizin Berlin, patients benefit from the combined expertise of various departments at Charité.
The BCSE helps patients with rare diseases to find the right experts and coordinates interdisciplinary cooperation in cases of unexplained symptoms. Doctors can use the BCSE to better understand complex disease processes through interdisciplinary exchange and specialised diagnostics.
Finding the right contacts for diagnosis and treatment
Patients affected by rare diseases can contact the BCSE directly, whether to find experts for a previously diagnosed rare disease or to clarify suspected diagnoses. Through intensive case management and the organisation of interdisciplinary case conferences, the BCSE refers patients to specialised departments where further investigations, such as specialised blood tests, can be carried out. These technologies often pave the way for the identification of genetic diseases, offering individuals the possibility of more precise diagnoses and targeted therapies.
Certified Type A centre since 2024
Since 2024, the Berlin Centre for Rare Diseases has been officially recognised as a leading centre for rare diseases in Germany - certified as a Type A Centre according to the standards of the National Action League for People with Rare Diseases. The certification demonstrates that the BCSE sets and successfully meets the highest standards in all relevant areas, from patient-centred treatments to research, education and accurate documentation.
Since 2011, the Berlin Centre for Rare Diseases at the Charité has been a central contact point for people with rare diseases and patients with unclear diagnoses. Since 2023, the BCSE has been under the medical direction of Prof. Dr. Knut Mai (adult medicine, endocrinology) and Prof. Dr. Peter Kühnen (paediatrics, endocrinology).
Rare Disease Day on the last day of February
Rare Disease Day, the International Day for Rare Diseases, is held every year on the last day of February to raise awareness of the challenges faced by people living with rare diseases. Activities are held around the world to support this cause.
Find out more:
- Alliance for Chronic Rare Diseases (ACHSE e.V.) (only German)
- National Action League for People with Rare Diseases (NAMSE)
- Central information portal for rare diseases (only German)
Source: News article from HealthCapital Berlin Brandenburg, 28 February 2025, based on the press release from Charité - Universitätsmedizin Berlin, 28 February 2025
The future of medicine: Capital Region Innovation Center
The capital region has developed into a world-leading location for healthcare and life sciences thanks to close collaboration between leading global players, renowned scientists, first-class hospitals and an innovative start-up community. Interdisciplinary networks, highly specialized professionals, technology transfer and disruptive technologies play a crucial role in transforming scientific knowledge into innovative products for the global healthcare market.
For more information about the HealthCapital Berlin-Brandenburg cluster, the economic development of growth industries in the region, and business and technology funding for companies, investors and scientific institutions, please contact: