Recognition as Swiss Reference Centers
Three additional joint specialized programs offered by the Eastern Switzerland Children’s Hospital and the St. Gallen Cantonal Hospital site of HOCH Health Eastern Switzerland have been newly recognized as Swiss reference centers by the National Coordination for Rare Diseases (kosek) following an extensive application process. These are the reference centers for rare liver diseases, for rare neurological diseases and epilepsies, and for rare endocrine diseases. This brings the total number of Swiss reference centers for rare diseases offered under the umbrella of the Eastern Switzerland Center for Rare Diseases (ZSK-O)—which is jointly operated by the Children’s Hospital of Eastern Switzerland and the Cantonal Hospital of St. Gallen—to eight.
More than half a million people in Switzerland live with a rare disease. A disease is considered rare if it affects fewer than five people per 10,000 inhabitants. Between 6,000 and 8,000 rare diseases are currently known worldwide. People with rare diseases often face a long journey to a diagnosis. The points of contact and specialized professionals for these diseases are generally not well known. This applies to referring primary care physicians as well as to the patients themselves. To change this, doctors, patient organizations, and institutions are joining forces: Together, they aim to shorten the path to diagnosis and improve care.
Reference centers serve as central hubs for the specialized care of children and adults with conditions belonging to the disease group associated with that particular center. Each disease group encompasses several hundred rare diseases—a fact that demands the highest level of expertise. To be recognized as a reference center, more than just specialized knowledge is required: an interdisciplinary care structure is crucial. This means that experts from various medical disciplines work together to treat these often complex clinical conditions. Only in this way can patients receive the best possible, coordinated care. Source: www.kosekschweiz.ch
PD Dr. Dr. David Semela, Deputy Chief Physician at the Department of Gastroenterology/Hepatology and Coordinator of the newly certified Swiss Reference Center for Rare Liver Diseases in St. Gallen, would like to thank all those involved—on behalf of all the other coordinators—for their excellent collaboration in day-to-day clinical practice and for the constructive and well-organized application process. “We are delighted and proud that our institutions have been recognized by KOSEK as Swiss Reference Centers,” said David Semela.
The Eastern Switzerland Center for Rare Diseases (ZSK-O) is operated through an interdisciplinary collaboration between HOCH Health Eastern Switzerland at the St. Gallen Cantonal Hospital and the Eastern Switzerland Children’s Hospital. The center serves as a point of contact in Eastern Switzerland for patients who, despite extensive testing for their symptoms, have not yet received a diagnosis and require further evaluation. Thanks to the coordinated approach at the ZSK-O, the time it takes to reach a diagnosis can be shortened in many cases, allowing those affected to receive appropriate treatment and therapy more quickly, as well as support in managing their daily lives and connecting with others facing similar challenges.
Patients with rare diseases receive disease-specific care at several specialized referral centers from specialists at HOCH Health Ostschweiz and the Eastern Switzerland Children’s Hospital.
Press Release from the Eastern Switzerland Children's Hospital and HOCH Health Eastern Switzerland – kosek Accreditation of Reference Centers – March 2026