To the patient information
If you or your child are ill and no diagnosis has been made despite extensive clarification by your family physician and various specialists, you can contact a CSE.
You can find all the information on how to contact us on this page:
- Documents required to make contact
- Transmission of your medical history documents
- Final notes on registration
- Contact form for new introductions to our ZSE
- What happens after contacting us
If you already have a confirmed diagnosis of a rare disease, please click here to find out how to proceed.
If you would like to contact us as a patient with an unclear diagnosis, we will need some documents from you in advance. This includes our ZSE questionnaire, which you can download from the following link:
Please complete the questionnaire in full. We also need the following information from you
- Details of the general practitioner or specialist who is available for queries PDF further down this page?
- A description of your complaints in free text form - the time course of the complaints also plays an important role for us here
- All relevant medical or hospital reports (in copy)
- If available: All relevant genetic or histopathological findings (in copy)
- If available: All relevant radiological or laboratory findings (in copy)
- If available: Reports from other CSEs (in copy)
Note: We only process complete requests. In principle, in chronological order by date of receipt - we reserve the right to deviate from this procedure for medical reasons.
You can send us these documents in the following two ways:
Transmission by post
Please send your documents to the following address:
- Hannover Medical School
Centre for Rare Diseases
OE 5130
Carl-Neuberg-Str. 1
30625 Hannover
Please do not send us any originals, but only copies of your documents.
Transmission by fax
Please fax your documents to:
- +49 511 532-161133
If you need to send us CDs with image data in addition to the fax information, we would be pleased if you would then send us the collected documents on your medical history by post - and not send us part by fax and part by post.
Final notes on registration
If you or your child are ill and no diagnosis has been made despite extensive clarification by your family physician and various specialists, you can contact us using the following form. Mandatory fields in the form are marked with an "*". Please also note the final notes on Data Protection before sending the form.
Note: After the end of the acceptance stop in our ZSE, the "Contact form for new entries in our ZSE" will be available here again!
- Find out more about the current freeze on acceptances at the Centre for Rare Diseases
Due to the large number of findings to be reviewed and the high number of requests, processing usually takes several months. Please refrain from making parallel enquiries to several CSEs. We will work through your documents in detail and contact you by telephone or e-mail to deal with the queries that usually arise. We will also discuss your medical history in our interdisciplinary case discussions / case conferences and conduct additional scientific research in the medical literature.
The results of our assessment, our evaluations and recommendations will be sent to you in writing in the form of a report (however, we cannot initiate diagnostics or make a diagnosis without personal physician-patient contact). We may also recommend an appointment at the ZSE outpatient clinic.