FAQ (Frequently Asked Questions) ZSE Ulm

The ZSE Ulm can support you in finding a clear medical diagnosis. We have set ourselves the goal of coordinating a comprehensive interdisciplinary investigation of symptoms for which a satisfactory classification has not yet been achieved. A holistic assessment should improve the indication for diagnostics and enable more targeted use of suitable treatment methods once the diagnosis has been made. Please note that a comprehensive basic diagnosis must be carried out before making an inquiry at the center.

Patients with an unclear diagnosis or unclear symptoms should first contact their doctor to find out whether they may have a rare disease in the medical sense and whether an inquiry at the ZSE Ulm seems sensible.

For patients who have already been diagnosed with a rare disease, we offer you selected expertise in our nine specialist centers.
ZSE Ulm specialist centers​​​​​​​

The following documents must be submitted to us by post, fax or email.
Information sheet for registration​​​​​​​​​​​​​​

We ask for your patience as we process your request. Due to the complexity of your request, it may take longer. Please note that the contact point of the Center for Rare Diseases (ZSE) Ulm does not guarantee acute care.

In the event of acute symptoms, please contact your family doctor or the emergency consultation hours in your area first.

SE-Atlas - Care Atlas for people with rare diseases
Orphanet - The portal for rare diseases and orphan drugs
Axis e.V. - Alliance for Chronic Rare Diseases (Axis e.V.)
ZIPSE - Central information portal about rare diseases
NAMSE - National Action Alliance for People with Rare Diseases
National Organization für Rare Disorders (NORD)
Care-For-Rare - Foundation for children with rare diseases (English-language site)​​​​​​​
OMIM- National Database of Genetic Diseases
​​​​​​​EURORDIS - Alliance of European Patient Organizations for Rare Diseases (English-language site)

Rare and highly complex diseases require highly specialized healthcare. Forces and resources for the diagnosis and treatment of rare diseases must be pooled and specialist knowledge exchanged across borders. The ZSE Ulm is involved in the European networks for rare diseases.
Networks ZSE Ulm

The currently approximately 8,000 known rare diseases often occur in childhood and adolescence, but also increasingly in adulthood and are often genetically determined.

Treatment is made more difficult due to the complexity of the clinical pictures. The symptoms and course of the disease can also vary greatly. New diagnostic procedures, chronic courses in conjunction with a gradual worsening of symptoms can indicate a rare disease. What makes it more difficult for those affected, who have often gone through a years-long odyssey of finding a diagnosis, is the lack of information about specialists or poor assessment of the findings by the supervising doctors. Here, the centers are primarily intended to be the interface for the practicing medical profession and those affected in order to make it easier to find a diagnosis together. Nevertheless, there is often no satisfactory solution or diagnosis for patients. Here we see the approach of somatic and psychosomatic care and treatment in order to be able to develop strategies for dealing with the existing complaints, which can then be supplemented with further diagnostics if necessary.