To the homepage of the ZSE
The Centre for Rare Diseases (ZSE) is an independent interdisciplinary institution of Hannover Medical School (MHH). The task of the ZSE is to improve medical care for people with rare diseases, whereby a disease is considered rare if it affects no more than 5 in 10,000 people. However, it must be assumed that in the Federal Republic of Germany alone, around 4 million people are affected by a rare disease, especially children.
Finding a diagnosis for many rare diseases remains a challenge, especially if the symptoms do not correspond to a typical clinical picture or if not all aspects can be considered in a superordinate context as part of a specialist diagnostic clarification. This often means that a diagnosis cannot be made or can only be made after many visits to the physician. In addition to the stressful uncertainty about the cause, treatment options and prognosis of the disease, those affected (patients and parents) may lose valuable time for medically relevant decisions.
The central task of the ZSE at the MHH is therefore to provide patients with a rare disease with higher-level care as a cooperative network of treating physicians and scientists from various departments in order to enable a faster, targeted diagnosis and to be able to offer individualized interdisciplinary care.
The Centre for Rare Diseases (ZSE) was founded in 2011 as part of the Institute of Human Genetics at Hannover Medical School and has been an independent department since 2018. There are currently 36 B-Centres affiliated to the superordinate A-Centre (see organization chart).
The ZSE cooperates with other university Centres for Rare Diseases, hospitals and other medical facilities or Institutions beyond the boundaries of the MHH and is networked throughout Germany. In addition, the ZSE of the MHH participates in a total of nine European Reference Networks (ERNs) and three German Reference Networks.
This close networking creates an interdisciplinary infrastructure that makes it possible to offer patients with rare diseases or unclear diagnoses comprehensive interdisciplinary diagnostics and medical care. The B centers of the ZSE of the MHH cover the complete diagnostic range for various groups of diseases, whereby the core task of interdisciplinary coordination is taken over by the A center in the sense of a cross-disease reference center.
In order to be able to guarantee professional care for people with rare diseases, the specialist center managers of all B centers have outstanding expertise in the treatment of rare diseases in their respective fields and, like the management of the A center, are available to the ZSE for at least 20 hours per week as contact persons for patients, relatives, medical staff and other service providers (e.g. other hospitals, rehabilitation facilities or Institutions, registered physicians).
Patients are cared for by interdisciplinary and multi-professional teams whose composition is adapted to the respective disease and coordinated by the A-Center.
Rare diseases often manifest themselves in (early) childhood. In these cases in particular, a targeted, rapid diagnosis is not only crucial for adequate medical care, but an early start to outpatient or inpatient treatment can also make a decisive contribution to the prognosis of the disease in question. For this reason, the ZSE cooperates closely with the Center for Pediatrics and Adolescent Medicine at the MHH, which is also involved in 12 B centers.
- Organizational chart of the Centre for Rare Diseases MHH (as of June 2025)
The ZSE at the MHH has developed a structured care pathway for patients with rare diseases or unclear diagnoses, which is set out in writing across all centers. The processes are organized in a patient-oriented manner in accordance with the criteria defined in the National Action Plan for Rare Diseases (NAMSE):
- across all diseases in the Centres for Rare Diseases (A-Centres) and
- for defined indicator diagnoses in the integrated and cooperating specialized centres (B-Centres) along the patient pathway
Patients with rare diseases often go through an "odyssey" of recurring visits to physicians from different specialties until the correct diagnosis is made, which can often only be made after many years. By optimizing patient pathways, medical resources can therefore be pooled in many cases in addition to improving care, thus saving resources overall. This once again highlights the relevance of intensive cross-sector collaboration, the primary goal of which remains the concrete improvement in the quality of life of patients, who can often only be given access to adequate treatment through targeted diagnostics and diagnostic confirmation.
With the overarching goal of improving the care of patients with rare diseases, we are working together as a team at the ZSE of the MHH to create the necessary conditions. An overview of the contact persons at the A-Center and their areas of work:
- Christine Babka (medical pilot, consultation hours for unclear diagnoses)
- Dr. med. Vega Gödecke (senior physician, coordination)
- Emily Miska (medical assistant, outpatient clinic)
- Anna Rehhahn, MSc (non-medical pilot, coordination)
- Viktorija Schmidt (Medical assistant, outpatient clinic)
- Dr. med. Martina Schwalba (Medical pilot, consultation hours for unclear diagnoses)