January 2010:

Marfan Center Founded

A Charité/DHZB Joint Project

At the beginning of the year the Marfan Center, founded jointly by Charité-Universitätsmedizin and the DHZB and located in the DHZB, was opened. The interdisciplinary Marfan team is led and coordinated by Prof. Roland Hetzer and, as his deputy, Prof. Felix Berger. Senior physician Dr. Petra Gehle is the organizational head. Recent changes in the law allow hospitals with the necessary expertise to treat patients with particular rare diseases in outpatient centers. These diseases include Marfan syndrome but also mucoviscidosis, which damages the heart and lungs, ALS, rheumatism and others. The violin virtuoso Paganini, US President Lincoln and volleyball star Flo Hyman all suffered from the rare, genetically determined, generalized disease of the connective tissue known as Marfan syndrome. The disease, which primarily affects the skeleton, eyes, heart and blood vessels, was first described by the Parisian pediatrician Antoine-Bernard Marfan (1858-1942), who also drew attention to the fatal danger of type-A aortic dissection.

 

Around 8000 people in Germany suffer from Marfan syndrome, with one case among 10,000 of the population. The DHZB knows of and treats 300 patients with the syndrome.

 

The Marfan Center is currently situated in rooms belonging to the Surgical Outpatient Department on the second floor but, when the present building work is finished, it will move to the ground floor, near the Pediatric Outpatient Department. The opening hours have been well attended by the first patients. The Marfan patients are examined and appointments are made with the appropriate specialist physicians in the Virchow Klinikum of the Charité and the DHZB. This facilitates highly qualified outpatient care at a single center, with a specialized advisor, who acts as a navigator among appointments, physicians and the results of individual examinations. The Marfan Center supplies all services, which means that the examinations can all be performed on one day, thus sparing the patient time and inconvenience, and the patients remain in the care of a single, familiar advisor. The purpose of the Marfan Center is not only to provide treatment for Marfan patients but also to research this rare disease.

 

A flyer for patients on Marfan syndrome is in preparation.

 

Marfan Center

Tel. for appointments: 030-4593 232