Patient information with an unclear diagnosis

Dear colleague, dear colleague,
Dear patient,

We would like to give you a brief information and assistance on the procedure at the Center for Rare Diseases in Ulm in advance.

The ZSE Ulm only sifts through medical inquiries. Please contact your treating GP or specialist.

Please note that the Center for Rare Diseases Ulm does not offer consultation hours, so a personal introduction is not possible.

Please note: We ask for your patience in processing your request. It may take longer due to the complexity of your request. Please note that the contact point of the Center for Rare Diseases (ZSE) Ulm does not guarantee acute care. In the event of acute complaints, please first contact your family doctor or the emergency consultation hours in your area.


For referring doctors

Patients with an unclear diagnosis or unclear complaints should first get in touch with their attending physician to find out whether a rare disease in the medical sense may be present and whether an inquiry at the ZSE Ulm makes sense. A possible appointment in one of the special consultation hours or in one of the outpatient departments of the Ulm University Hospital will only take place after a detailed review of the files, depending on the expertise held by us.  

Please note that a comprehensive basic diagnosis must be carried out before an inquiry is made at the center.

You will find an overview of the expertise of the Center for Rare Diseases Ulm listed on the ZSE website under the menu item Supervized diseases and under specialis centers. There you can find out more before you send a written request to the center.

Patients with very complex symptoms very often also have a psychological concomitant disease. For this reason, a screening is carried out at our center by specialists in somatic complaints as well as by experts in psychiatric-psychosomatic diseases. We see ourselves as obliged to take a holistic approach.

After viewing the files, you and the patient will receive a written recommendation letter. This can be a recommendation for further diagnostics or we think it makes sense to invite you to a consultation at one of our specialist centers at the ZSE Ulm or one of our special outpatient clinics at the University Hospital.



For a smooth process and in order to shorten the duration of the request to be processed, we request that you send the request documents in full.

The following documents must be submitted to us by post, fax or email.

  • Referral form from your treating doctor (person with statutory health insurance)
  • Medical request from your treating doctor (to be completed by the referring physician)
  • Registration form for referring physicians of your treating doctor (to be completed by the referring physician)
  • Medical history questionnaire (to be completed by patients with the help of their family doctor or specialist)
  • Family history form
  • Copies of all relevant previous medical findings (somatic and psychosomatic/psychiatric findings)
  • Medication schedule
  • Relevant imaging images on CD
  • Meaningful photographic material on externally visible changes in the skin/hair/mucous membranes/eyes/face, hands, feet, ears
  • Consent to release from confidentiality


We ask for your understanding that we can only review complete documents. If the required documents are incomplete or not sorted chronologically as described above (findings), we cannot process your request!

Please send your request by post, email or fax to the address below:

Please take note of the "Information on data protection" before sending.

Due to the extensive processing, waiting times of several weeks may arise, for which we ask for your understanding.


Contact form doctors

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Contact & opening times

Contact point Centre for Rare Diseases Ulm
Universitätsklinikum Ulm | c/o Klinik für Kinder- und Jugendmedizin ZSE Kontaktstelle
Eythstraße 24
89075 Ulm




Further centers for rare diseases in Germany

Here you will find the currently existing centers for rare diseases in Germany. For more information, please visit the Care Atlas for People with Rare Diseases website: