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Rare Liver Diseases
EASL Policy Dialogues S3 E1: Rarity and parity – Addressing inequities in rare liver disease

EASL Policy Dialogues S3 E1: Rarity and parity – Addressing inequities in rare liver disease

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Laurent Perrin
Description This episode features Member of European Parliament (MEP) Monica Semedo and patient advocate José Willemse come together to discuss the challenges and barriers faced by patients both in managing their illnesses and in addressing unmet needs in the policy sector. Special attention will be paid to stigma and inequities within the ...
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ERN Rare-Liver on-demand Webinar: Alpha-1 antitrypsin deficiency: A poster child for nucleic acid therapy

ERN Rare-Liver on-demand Webinar: Alpha-1 antitrypsin deficiency: A poster child for nucleic acid therapy

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Laurent Perrin
Description In this ERN Rare-Liver webinar, held on 12 December 2023, Prof. Strnad and Dr Ruiz gave an exciting update to the alpha-1 antitrypsin deficiency. The presentation covered “siRNA therapy in hepatology: a1-AT deficiency”. Targeted Audience General practitioners Hepatologists Oncologists Health care professionals Alpha-1 antit...
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ERN Rare-Liver on-demand Webinar: Liver transplantation and vascular liver disorders

ERN Rare-Liver on-demand Webinar: Liver transplantation and vascular liver disorders

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Laurent Perrin
Description This joint VALDIG-ERN-EASL webinar, held on 13 September 2023, aims to clarify some of the below points, while gathering a panel of experts in the field and promoting vivid discussion in order to improve care for these rare and somehow difficult-to-treat patients.
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ERN Rare-Liver on-demand Webinar: Portal hypertension (CPSH) in Wilson Disease

ERN Rare-Liver on-demand Webinar: Portal hypertension (CPSH) in Wilson Disease

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Laurent Perrin
Description In this ERN Rare-Liver webinar, held on 11 April 2023, the Dr Reiberger and Dr Burghart discuss about the evidence of cirrhosis and portal hypertension in Wilson Disease and share their experience as physicians as well as what are the therapeutic aspects such as the impact of chelator-therapy on acute and chronic liver disease p...
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ERN Rare-Liver on-demand Webinar: Background and implementation of ORPHAcodes

ERN Rare-Liver on-demand Webinar: Background and implementation of ORPHAcodes

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Laurent Perrin
Description In this ERN Rare-Liver webinar, held on 28 February 2023, Prof. Dr Christoph Schramm, Céline Angin and Marie-Cécile Gaillard discussed the advantages of ORPHAcodes and how to work with them in ERN RARE-LIVER centres for improving the treatment of patients. They also talked about the history of Orphanet and how the French Nationa...
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ERN Rare-Liver on-demand Webinar: Primary bile acid synthesis defects

ERN Rare-Liver on-demand Webinar: Primary bile acid synthesis defects

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Laurent Perrin
Description In this ERN Rare-Liver webinar, held on 13 December 2022, the panel discussed the diagnosis of bile acid synthesis and about the French experience in long-term treatment with cholic acid. Targeted Audience General practitioners Hepatologists Oncologists Health care professionals  
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ERN Rare-Liver on-demand Webinar: Biliary atresia

ERN Rare-Liver on-demand Webinar: Biliary atresia

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Laurent Perrin
Description In this ERN Rare-Liver webinar, held on 20 December 2022, the panel discussed how to screen for biliary atresia, future paradigms for treating biliary atresia and the role of the EBAR registry. Targeted Audience General practitioners Hepatologists Oncologists Health care professionals  
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ERN Rare-Liver on-demand Webinar: The new EASL Clinical Practice Guidelines on sclerosing cholangitis

ERN Rare-Liver on-demand Webinar: The new EASL Clinical Practice Guidelines on sclerosing cholangitis

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Laurent Perrin
Description In this new ERN Rare-Liver webinar, held on 29 November 2022, ERN wanted to draw attention to the new EASL Clinical Practice Guideline on Sclerosing Cholangitis, which has been published in June 2022. Prof. Annika Bergquist, Prof. Christoph Schrammin, Prof. Ulrich Beuers and Prof. Olivier Chazouillères discussed about improving ...
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ERN Rare-Liver on-demand Webinar: VALDIG-ERN-EASL Webinar: Management of pregnant women with vascular liver disorders and portal hypertension

ERN Rare-Liver on-demand Webinar: VALDIG-ERN-EASL Webinar: Management of pregnant women with vascular liver disorders and portal hypertension

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Laurent Perrin
Description In this webinar that was held on 11 October 2022, Aurélie Plessier and Filipe Nery drove the discussions around the management of portal hypertension in pregnancy, especially what to expect of splanchnic hemodynamic changes in pregnancy presented by Arnulf Ferlitsch, and how to prepare a woman in childbearing age with portal hyp...
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ERN Rare-Liver on-demand Webinar: New EASL Guidelines on the management of cystic liver diseases

ERN Rare-Liver on-demand Webinar: New EASL Guidelines on the management of cystic liver diseases

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Laurent Perrin
Description In this webinar, which took place on 13 September 2022, Thijs Barten, Joost PH Drenth, Frederik Nevens and Richard Taubert discuss how the new EASL Guidelines on the management of cystic liver diseases has been created and they will also highlight some of the cases that are presented in the guidelines. Targeted Audience Genera...
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