To the homepage of the ZSE
Dear patients and relatives!
Your attending physician suspects a rare disease? Then you will find below all the necessary documents with which your physician can register you for an interdisciplinary case conference at our Centre for Rare Diseases. This is where an interdisciplinary exchange takes place between various specialist centers, including Clinical Genomedicine.
Have you been diagnosed with a rare disease? We will be happy to help you find the right contact person.
With best wishes for a successful treatment,
Your ZSE team at the MHH
This is how you contact us as a patient:
There are two basic ways to contact the Centre for Rare Diseases at Hannover Medical School:
- Your attending physician suspects that you suffer from a rare disease, but a confirmed diagnosis is still pending. In this case, please submit your request to the ZSE via your family physician or treating specialist. Here is a brief overview of the documents we require for registration at the ZSE.
- If you are suffering from a rare disease that has already been diagnosed and are looking for an appropriately specialized B centre, you will find information here on how to contact us if the diagnosis is confirmed.
The ZSE has a standardized procedure for contacting us in both cases. At this point, we kindly ask you to adhere to the specified registration channels. This also guarantees you the shortest processing time. If you have any problems or questions during the registration process, we will of course be happy to help you. You will find the contact details of our medical guides further down on this page.
For acute complaints:
In emergencies, please contact your attending physician or an emergency medical service directly.
Additional information and helpful websites
- Directory of Centres for Rare Diseases in Germany: se-atlas
- European portal for rare diseases with comprehensive information in various languages: Orphanet
- Directory of self-help groups (is continuously updated - you are welcome to have your self-help group listed)
- Alliance of Chronic Rare Diseases: achse
- Directory of contact points and self-help organizations as well as keyword directory on diseases: Selbsthilfe-Büro Niedersachsen
Still have questions? Our guides are there for you!
If you have any questions about contacting the Center for Rare Diseases online, we will be happy to help you. However, please understand that we cannot provide medical advice or assess your personal medical history over the phone. We are also unable to make appointments for consultations by telephone until your online registration with the ZSE has been completed (see checklist). We are available by telephone twice a week for initial inquiries and queries.
