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Reference centre for rare liver diseases - RARE-LIVER Basel

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RARE-LIVER Basel is one of the cosec recognised reference centre.

A reference centre of the National Coordination of Rare Diseases (kosek) meets high standards in the care, education and research of rare diseases. It offers specialised consultation hours and information and coordinates a range of services for those affected across all ages. The aim is to provide the best possible support and care for children, adolescents and adults with rare diseases.

The University Centre for Rare Diseases Basel is a joint service of the UKBB and the University Hospital Basel USB. Since 2020, this service has been recognised by kosek, which is committed to improving the care situation for people affected by rare diseases.

Offer

Diagnosis, treatment and long-term care of rare liver diseases in children and adults.

Key points of the offer:

  1. Autoimmune liver diseases (AIH, PBC, PSC)
  2. Rare cholestatic diseases
  3. Metabolic liver diseases (e.g. Wilson's disease, glycogenoses)
  4. Vascular liver diseases (Budd-Chiari syndrome, porto-sinusoidal vascular diseases)
  5. Rare benign and malignant liver tumours
  • Structured transitional care from childhood to adulthood
  • National and international networking

Consultation hours

  • Transition consultations (joint paediatrics & adult medicine)
  • Tumour and special consultation hours as part of Clarunis

Interdisciplinary boards

Weekly interdisciplinary boards:

  • Rare Disease Board
  • Liver Histopathology Board
  • Radiology Board
  • Abdominal tumour board

 

  • Formalised cooperation (USB-UKBB-KSBL)
  • Structured transition concept (based on national HUG concept)
  • Close national & international networking

Research

The centre is heavily involved in experimental, translational and clinical research (University of Basel, Department of Biomedicine, Department of Clinical Research, CTU).

National registers:

  • Swiss AIH Registry
  • Swiss PSC Registry
  • Swiss PBC Registry
  • Swiss Registry on Hepatocellular Adenoma
  • Swiss Rare Disease Registry (SRDR)

International networks:

  • Alpha-1-antitrypsin deficiency (ERN)
  • Pro-Euro DILI Registry

Several clinical studies (e.g. nor-UDCA / nor-cholic acid in PSC and PBC)

Patient organisations and professional societies

Patient organisations:

Specialist organisations / networks:

Counselling hotline for child and youth emergencies

The Medgate Kids Line provides quick and uncomplicated medical advice if your child is unwell. The medical team of our partner Medgate is available to you by telephone around the clock.

058 387 78 82
(billing via health insurance)

For emergencies abroad: Call the emergency number of your health insurance company. You will find this number on your health insurance card.

More information: On the Page of the emergency ward you will find everything you need to know about behaviour in emergencies, typical childhood illnesses and waiting times.

Important emergency numbers

144 Outpatient clinic
145 Tox Info Suisse (Poisonings)
117 Police
118 Fire brigade

UKBB

University Children's Hospital Basel
Spitalstrasse 33
4056 Basel | CH

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