The Centre for Rare Diseases (ZSE) is part of Ulm University Hospital and the Faculty of Medicine and is therefore an association of numerous clinics and institutes that deal with rare diseases. The main purpose of the centre is to act as a contact point for affected patients and their treating physicians.
In the EU, diseases with a prevalence of ≤5:10,000 people are defined as SE. Around 8,000 of the approximately 30,000 known diseases are therefore SE. Due to this large number, around 30 million people are affected in Europe and around 4 million in Germany. Many of those affected do not have a definitive diagnosis. More than 80% of SEs are genetic and therefore lead to lifelong illnesses. In addition, the usually late diagnosis and the frequent lack of treatment contribute to severe disease progression. Due to the small number of patients, the development of a drug would be unprofitable.
Selten sind viele - Universitätsklinikum Ulm informiert über neue Wege in Diagnostik und Versorgung von Seltenen Erkrankungen
Seltene Erkrankungen stellen Betroffene, Angehörige und das Gesundheitssystem vor besondere Herausforderungen. Das Zentrum für Seltene Erkrankungen (ZSE) am Universitätsklinikum Ulm setzt sich daher kontinuierlich dafür ein, die Aufmerksamkeit für diese oft wenig bekannten Krankheitsbilder zu erhöhen, den Zugang zu Diagnostik zu verbessern und die Versorgung nachhaltig zu stärken.[...]
Großes bundesweites Treffen von Lipodystrophie-Betroffenen in Ulm
Patiententag des Deutschen Referenznetzwerks stärkt Austausch und Wissen: Mit 50 Teilnehmenden fand am 18. April 2026 in Ulm der bislang größte Patiententag für Menschen mit Lipodystrophie im deutschsprachigen Raum statt. Veranstaltet wurde das Treffen vom Zentrum für Seltene Erkrankungen (ZSE) Ulm gemeinsam mit der Patientenorganisation NETLIP e.V.
Lipodystrophie ist eine sehr seltene Erkrankung des Fettgewebes, die häufig mit erheblichen Stoffwechselstörungen einhergeht. Umso wichtiger sind verlässliche Informationen und der Austausch unter Betroffenen. [...}
The Lipodystrophy Stammtisch - every first Tuesday of the month
Are you affected by lipodystrophy and have questions on specific topics? Would you like to exchange ideas with other people affected?
The Lipodystrophy Stammtisch (online) was set up jointly by the German Reference Network Lipodystrophy and the patient network NetLip. We invite experts on a specific topic to each meeting. The experts give a short presentation and then answer all your questions. In an informal atmosphere, the regulars' table also invites you to exchange experiences and get to know other affected people.
New therapy offers hope for acquired hypothalamic obesity
The hypothalamus is a vital part of the diencephalon and plays a central role in the regulation of hunger, satiety and metabolism. If the hypothalamus is damaged during childhood, so-called acquired hypothalamic obesity can develop - a rare, severe form of obesity that is currently untreatable. A study being conducted at the Department of Paediatrics and Adolescent Medicine at Ulm University Hospital (UKU) and elsewhere is currently investigating a new drug treatment option with the active ingredient setmelanotide. Initial interim results are promising and indicate that the new therapy could represent a turning point in the treatment of the disease. [...]
Download: Full press release
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Here you have the opportunity to send us your suggestions, praise or criticism. Thank you very much.
events
Jul
Jeden ersten Dienstag im Monat lädt der Stammtisch zum Kennenlernen und Austauschen mit anderen Betroffenen ein. Der Stammtisch findet online statt.
19:30 Uhr | Online via WebEx
Aug
Jeden ersten Dienstag im Monat lädt der Stammtisch zum Kennenlernen und Austauschen mit anderen Betroffenen ein. Der Stammtisch findet online statt.
19:30 Uhr | Online via WebEx
Your enquiry to the Centre for Rare Diseases Ulm
You will find all the information you need to register under the links below or on the homepage in the menu on the right.
Central contact point ZSE Ulm
Centre for Rare Diseases (ZSE)
Eythstraße 24
89075 Ulm
Tel: (+49) 731 500-57080
Fax: (+49) 731 500-57058
E-mail: zse@uniklinik-ulm.de
Our centre sees rare diseases as a research mission to improve diagnostic and therapeutic options for future generations. If you would like to make a contribution, please support us by making a donation to the account indicated.
Donation account
Ulm University Hospital
Sparkasse Ulm
IBAN DE16 6305 0000 0000 1064 78
BIC SOLADES1ULM
Purpose: D.4150 ZSE
Quality reports
DZKJ - German Centre for Paediatric and Adolescent Medicine
Ulm Child Health (UCH) is an initiative of a group of departments at the University of Ulm that deal with child development and diseases and is coordinated by the renowned Department of Paediatrics.
UCH has successfully applied to participate in the German Centre for Child and Adolescent Health (DZKJ), a German Centre for Health Research (DZG) planned by the Federal Ministry of Education and Research (BMBF). The start-up phase is scheduled to begin in May 2024. In the DZKJ, UCH is only referred to as the DZKJ site in Ulm.
