Ern Rare-Liver
ERN RARE-LIVER is a Europe-wide network for centres of excellence in the clinical management of rare liver disease in adults and in children. Types of diseases covered by the network currently include Autoimmune liver disease (AILD); Metabolic, Billary artresia and related disease; structural liver disease and rare liver disease in pregnancy. The network aims to improve the standards of clinical knowledge and of patient care in rare liver diseases throughout Europe. By working closely with clinical centres, doctors and patient organizations, the network will: disseminate best clinical practice guidelines; use innovative IT solutions to enable clinicians to access expert knowledge from all over Europe; update clinical guidelines to enable standardisation of care; and provide patients with relevant and high quality information.
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- 1co lead pbc working group
- 1patient representative rare diseases
- 1referentin für kommunikation & marketing ern am uke
- 1vice president patient care services
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