Dear colleague,
Dear patient, dear colleague, dear patient,

We would like to provide you with brief information and assistance regarding the procedure at the Centre for Rare Diseases in Ulm.

The ZSE Ulm only reviews medical enquiries. Please contact your general practitioner or specialist.

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

Patients with an unclear diagnosis or unclear symptoms should first contact their attending physician to determine whether a rare disease in the medical sense may be present and whether an enquiry at the ZSE Ulm seems appropriate. A possible appointment in one of the special consultation hours or in one of the outpatient clinics at Ulm University Hospital will only be made after a detailed review of the files, depending on the expertise we have available.

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

You can find more information on the ZSE website under the menu item Diseases covered and under Specialist centres you will find an overview of the expertise of the Centre for Rare Diseases Ulm. You can obtain information there before sending your written enquiry to the centre.

Patients with very complex symptoms very often also have a concomitant mental illness. For this reason, specialists for somatic complaints as well as experts for psychiatric-psychosomatic illnesses carry out a triage at our centre. We see it as our duty to take a holistic approach.

You and the patient will receive a written letter of recommendation after the files have been reviewed. This may be a recommendation for further diagnostics or we may consider it useful to invite you to a consultation at one of our specialist centres at the ZSE Ulm or one of our specialist outpatient clinics at the University Hospital.

To ensure a smooth process and to shorten the duration of the enquiry to be processed, we request that you send us the complete enquiry documents.

The following documents must be submitted to us by post, fax or e-mail:

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

Please send your enquiry by post, e-mail 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 occur, for which we ask for your understanding.

Do you have any questions for us?

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