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The Centre

The University Centre for Rare Diseases was founded in the spring of 2014 under the University Hospital Carl Gustav Carus and the Medical Faculty of the TU Dresden and has since been making its contribution to improving the care of people with rare diseases and research into these diseases. In addition to ensuring care and clinical, translational and basic research, the focus is also on sharing information and bringing patients together with doctors, patient organisations and other centres.

Contact

The USE does not offer consultation hours in the conventional sense, and no treatment appointments are made. In order to make use of the USE, you first need a brief statement from your attending specialist as well as your most recent significant findings.

Patients, relatives and doctors who would like to contact us should first have their specialist fill out the questionnaire. This serves as an initial assessment of the case. Furthermore, we need the patient questionnaire, in which the patient himself provides some information about himself and his clinical picture. You can download the questionnaires from this page or have them sent to you by post by contacting our coordination office.

After receipt of the questionnaires, a referral slip and all relevant findings at the USE, we check whether the case requires assessment by the USE. If the case is accepted, we decide whether a presentation at an existing centre of excellence (in Dresden or at another location) is suitable for you or whether your case should first be discussed in our interdisciplinary case conference. In this case conference, specialists from several departments will discuss the most suitable course of action for you. You will be informed in writing about the results of this conference. Due to the large number of requests to the USE, we ask for your patience as it may take some time to process your request.

Download the questionnaires here:

  questionnaire for adults

 questionnaire for children

or contact our coordination office.

Team

 
Berner, Reinhard                                        

 Prof. Dr. med. Reinhard Berner
Speaker of the University Centre for Rare Diseases

Prof. Berner is a doctor of paediatrics and adolescent medicine and has been Director of the Clinic and Polyclinic for Paediatrics and Adolescent Medicine at the Carl Gustav Carus University Hospital of the TU Dresden since 2012. In addition to the diagnosis, therapy and prevention of infectious diseases, Prof. Berner specialises in diseases of the immune system and rheumatological diseases in children. As speaker, he manages the business of the USE and is responsible, among other things, for the internal organisation as well as the external representation of the USE.




Prof. Dr. med. Min Ae Lee-Kirsch
Vice Speaker of the University Centre for Rare Diseases

Prof. Lee-Kirsch is a specialist in human genetics and head of the Clinical Research Unit "Defects of the Innate Immune System in Autoinflammation and Autoimmunity" at the Department of Paediatrics and Adolescent Medicine. Other focal points include the diagnosis and therapy of rare metabolic diseases.


Dr. med. Joseph Porrmann
Temporary Vice-Speaker of the University Centre for Rare Diseases

Dr. Joseph Porrmann is a specialist in human genetics and head of the Genetic Outpatient Clinic at the Institute for Clinical Genetics Dresden.


Hanßke

Dr. med. Amalia-Mihaela Hanßke
Vice-speaker of the University Centre for Rare Diseases

Dr. Amalia Hanßke is a specialist in psychosomatic medicine and psychotherapy. Her clinical and research focus includes improved and more in-depth diagnostics, as well as care for patients with mental and psychosomatic disorders based on new evidence-based findings. Dr Hanßke offers detailed clarification and classification of existing findings as well as support in finding suitable and indicated therapies."


Dr. med. Nora Knappe
Medical coordinator of the University Centre for Rare Diseases

Dr. Nora Knappe is a specialist in paediatrics and adolescent medicine and is currently undergoing subspecialised training in paediatric pneumology at the Clinic and Polyclinic for Paediatrics and Adolescent Medicine at the Carl Gustav Carus University Hospital of the TU Dresden. She coordinates the presentation of patients in the interdisciplinary case conferences.


Dr. rer. medic. Tanita Kretschmer
Non-medical coordinator of the University Centre for Rare Diseases

Dr. Kretschmer studied Health Sciences and works as a coordinator at the University Centre for Rare Diseases. In this function, Dr. Kretschmer is the first point of contact for all those interested in the Centre and staffs the telephone consultation hours. Dr Kretschmer is responsible for all organisational matters relating to the Centre and for supporting innovative projects.

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