Welcome to

German Network for Systemic Scleroderma website

This website is open to patients and doctors as well as to all those interested in finding out more about scleroderma. We practise daily content management and make every effort to keep everything complete and up to date. If you have any queries or suggestions, we’d be happy to hear from you by e-mail.

 

The German Network for Systemic Scleroderma was founded on 1 October 2003. It consists of ten projects in the fields of clinical and basic research – conducted at expert centres – and a steadily growing number of clinical centres across Germany. The network is sponsored by the Federal Ministry for Education and Research – http://www.bmbf.de/de/1109.php – and forms part of a scheme to set up supra-regional networks dedicated to rare diseases. The Central Coordinating Office for the network is at the Universitätshautklinik (University Department of Dermatology and Venerology) in Cologne.

Systemic scleroderma is a rare but serious skin disease affecting between 40 and 200 people per million. Very little is known of the causes of the disease; current opinion is that most likely it may be a disease of the immune system, possibly involving inherited factors. In most cases the disease begins with a sensation of numbness in the finger tips, which are also more sensitive to cold. As the disease progresses, connective tissue is deposited in the skin, making it thick and stiff. If the affected skin is that surrounding joints, the result can be considerable loss of mobility. The disease becomes life-threatening when not only the skin but also the inner organs, such as lungs, kidneys or the heart are affected by the build-up of connective tissue.

The German Network for Systemic Scleroderma is firmly convinced that cooperation between numerous clinics throughout Germany which already have special expertise in treating this disease will deliver long-term benefits to optimize diagnosis and care of these patients. One other important activity for the network is to build a national scleroderma registry with anonymized patient data.

The following pages will introduce you to the network, its member clinics and their research projects. The sections “Information for patients” and “Information for doctors/medical staff” contain a wealth of information about the various forms of systemic scleroderma and provide details of how to contact clinics and support facilities.

If you have any queries or suggestions, please contact our central coordinating office.

Your

Network  for Systemic Scleroderma

► Central coordinating office

► Board

► Members

► Statutes