Seven HUG centers recognized as Swiss Reference Centers for rare diseases

The National Coordination of Rare Diseases (kosek) has recognized seven specialized centers at HUG as Swiss Reference Centers:

• The Swiss Reference Center for Rare Endocrine Diseases
• The Swiss Reference Center for Rare Diseases with Congenital Malformations and/or Neurodevelopmental Disorders
• The Swiss Reference Center for Rare Liver Diseases
• The Swiss Reference Center for Rare Neurological Diseases and Epilepsies
• The Swiss Reference Center for Rare Vascular Diseases with Multisystem Involvement
• The Swiss Reference Center for Rare Coagulation Disorders
• The Swiss Reference Center for Rare Dermatological Diseases

This recognition highlights HUG’s commitment to providing high-quality, comprehensive and coordinated care for people affected by these groups of diseases, as well as its network-based collaboration with healthcare providers and patient organizations.

These new recognitions apply to both adults and children and emphasize the close collaboration between pediatric and adult teams at HUG during the transition to adult care. They build on previous recognitions awarded to HUG for rare neuromuscular diseases (Myosuisse network), rare kidney diseases (RARE-Kidney network), rare bone diseases and rare non-inflammatory connective tissue diseases (SG BOND network), as well as rare immunological diseases and rare inflammatory connective tissue diseases (Swiss RITA network).

In addition to the HUG Rare Diseases Center, eleven specialized HUG centers are now recognized by kosek. To meet the complex needs of other patients, particularly in cases of congenital diseases, several associated centers and specialized consultations at HUG also work in an interdisciplinary manner and collaborate with genetics specialists and experts in rare diseases.

“This is the result of 25 years of activity dedicated exclusively to this field and of strong links with HUG’s internal and external partners to guide and support patients,” says Dr Loredana D’Amato Sizonenko, Deputy Physician in the Division of Genetic Medicine, coordinator of the HUG Rare Diseases Center and Orphanet Switzerland.

Since 2020, kosek has recognized the HUG Rare Diseases Center as one of the nine Swiss Centers for Rare Diseases. This center welcomes patients with or without a diagnosis in order to guide them toward appropriate care as close as possible to their place of residence. All its activities (information, guidance, coordination, training, research) are described on a new website launched in early 2026.

For kosek, the recognition of Centers for Rare Diseases and Reference Centers by medical specialty within a national network aims to ensure high-quality care throughout Switzerland.

This national coordination continues its work to recognize new specialized services in other disease groups. HUG is continuing its commitment by submitting further applications to strengthen its position as a leader in rare disease care.

Rare liver diseases: recognized expertise

The National Coordination of Rare Diseases (kosek®)  has granted HUG recognition as a Reference Center for rare liver diseases in both adults and children.

There are seven Reference Centers for rare liver diseases in Switzerland. They collaborate within the Swiss Rare Liver network. This national network brings together and coordinates the expertise of specialists, develops therapeutic guidelines, and organizes continuing education for healthcare professionals. It is composed of Reference Centers, associated centers, established healthcare providers, and patient organizations. It is a key factor in ensuring high-quality and accessible care throughout Switzerland.

Through Prof. Valérie McLin, Head Physician of the Pediatric Gastroenterology, Hepatology and Nutrition Unit, and Dr Nicolas Goossens from the Adult Gastroenterology and Hepatology Department, the HUG coordinate this national network for rare liver diseases (Swiss Rare Liver).

In this capacity, they work to strengthen collaboration between centres, promote the sharing of expertise, and structure the management of complex cases, notably through information, training and research initiatives, the harmonisation of practices, and the organisation of national symposia.

Useful links:
kosek press release of 25 March 2026
Hepatobiliary and pancreatic diseases center (for adults)
kosek®
Kosek® – Networks and Reference Centers
Swiss Rare Liver