The ZSE Ulm can support you in your search for a clear medical diagnosis. We have set ourselves the goal of coordinating a comprehensive interdisciplinary examination of symptoms for which no satisfactory classification has yet been achieved. A holistic clarification should improve the indication for diagnostics and enable a more targeted use of suitable treatment methods once a diagnosis has been made. Please note that a comprehensive basic diagnosis must be carried out before making an enquiry at the centre.

Patients with an unclear diagnosis or unclear symptoms should first contact their attending physician to find out whether a rare disease in the medical sense may be present and whether an enquiry at the ZSE Ulm seems appropriate.

For patients with an already diagnosed rare disease, we offer you selected expertise in our nine specialist centres.
Specialist centres ZSE Ulm

The following documents must be submitted to us by post, fax or e-mail.
Registration information sheet

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

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

SE-Atlas - Care Atlas for People with Rare Diseases
Orphanet - The Portal for Rare Diseases and Orphan Drugs
Achse e.V.- Alliance of Chronic Rare Diseases (Achse e.V.)
ZIPSE - Central Information Portal on Rare Diseases
NAMSE - National Action Alliance for People with Rare Diseases
National Organisation for Rare Disorders (NORD)
Care-For-Rare- Foundation for children with rare diseases
OMIM- National database for genetic diseases
EURORDIS- Alliance of European Rare Disease Patient Organisations (English site)

For example under:
Research for Rare

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

Self-help / Links & addresses

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

In Europe, a disease is classified as rare if it affects no more than one in 2,000 people.

Treatment is made more difficult due to the complexity of the clinical pictures. The symptoms and course of the disease can also vary greatly. Chronic courses in conjunction with a gradual worsening of symptoms can indicate a rare disease. The lack of information about specialists or poor diagnosis by the doctors caring for the patient is often an aggravating factor for those affected, who have often gone through years of odyssey to find a diagnosis. Here, the centres are primarily intended to act as an interface for doctors in private practice and those affected in order to make it easier to find a diagnosis together. Nevertheless, very often there is no satisfactory solution or diagnosis for patients. This is where 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.