Rare diseases
Welcome to the University Centre for Rare Diseases of the University Hospital Dresden
The University Centre for Rare Diseases (USE) at Dresden University Hospital has set itself the task of pooling medical expertise across disciplines and making it available to patients with rare diseases in order to shorten the path to the right diagnosis, ensure competent counselling and offer access to the best possible therapies.
A disease is considered rare if it affects less than 5 out of 10,000 people. Based on about 8,000 rare diseases, an estimated 4 million people in Germany alone are affected by such a disease. Rare diseases are usually very diverse and complex and are therefore still often not recognised in time and treated adequately.
At the University Centre for Rare Diseases, doctors, non-medical staff and scientists from different clinics and institutes work closely together to provide specialised and coordinated diagnosis and care for children and adults with rare diseases. In specialist and interdisciplinary case conferences, patients with both an unclear diagnosis and a known diagnosis are discussed in order to initiate adequate medical care. The centres involved in the University Centre for Rare Diseases are also active in research to better understand disease mechanisms and to be able to offer patients with rare diseases
innovative diagnostics and therapy in the future. For this purpose, four focus areas were initially defined at the University Centre for Rare Diseases, in which diagnosis, therapy and research are closely linked. The USE is also active in other specialist areas and works closely with the other centres for rare diseases in Germany as well as many patient organisations and self-help groups.
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Would you like to support us in our work? Then you can access our donations account here. Thank you very much!
Contact us
UniversityCenter for Rare Diseases0351 458-56080351 458-7297Contact Form
FAQ
- What happens after I submit all my documents to USE?
- First, we assess whether the case requires evaluation by USE.
- If accepted, we determine whether referral to an existing specialized center (in Dresden or elsewhere) would be suitable or if your case should first be discussed in our interdisciplinary case conference.
- In this conference, specialists from various fields discuss the best approach for your case.
- The results of this conference will be shared in a final report, which will be sent to both you and your referring specialist.
- Is a personal appointment possible at the center?
Currently, the USE does not offer in-person consultations or appointment bookings. Consultations are exclusively conducted by phone:
Tel: +49 351 458-5608
Telephone consultation hours: Tuesdays and Thursdays, 9:30-11:30 am
- How long will it take to process my case?
Our processing times depend significantly on the complexity of your symptoms and medical records, as well as the number of disciplines involved to provide optimal interdisciplinary diagnostic and therapeutic decisions. The current demand at the USE also affects processing times. Please be aware that the processing time for your case may currently take up to three months.
If you have questions about the status of your case, please contact our coordinator via email or during our consultation hours.
- What will the final report look like, and will I receive a definitive diagnosis?
The content of your final report may vary. It could include further diagnostic or therapeutic steps or specific referrals to specialist clinics. A definitvie diagnosis may not be possible in every case.
- My symptoms persist despite following the recommendations in the final report, or my condition has changed since the USE processed my case. Can I resubmit my case to the USE?
A re-evaluation of your case may be conducted, for example, if there have been changes in your medical findings. This re-evaluation is possible 24 months after the initial assessment. After thta ttime has passed, feel free to contact the USE again and provide the updated medical records.
- What happens to my documents after I receive the final report from the USE?
After your case has been reviewed at USE, your documents will be digitized, and the originals will be safely destroyed according to data protection guidelines. No originals will be returned. Therefore, please only submit copies of relevant medical findings.
- Some of the medical terms and statements in my final report are unclear to me. Who can help me with this?
If you need help with understanding medical terminology, please contact your referring primary care or specialist doctor. Alternatively, you can use the free service "Was hab’ ich?" (www.washabich.de) for translation assistance.