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

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 field and strategies to address these are discussed by both speakers.

This EASL Policy Dialogue episode is supported by Novo Nordisk. EASL has received no input from Novo Nordisk with regards to the content of this programme.

 

Speakers

 
Monica

Monica Semedo is a Member of the European Parliament from Luxembourg for the Renew Europe Group since 2019. She is Member of the Committee on Employment and Social Affairs and the Committee on Culture and Education and Substitute Member in the Committee of Economic and Monetary Affairs Semedo is Co-Chair of the Disability Intergroup and of the Intergroup on Social Economy. She is Member of the Anti-Racism and Diversity Intergroup (ARDI) and Member of the EU Delegation to the OACPS-EU Joint Parliamentary Assembly. As Cape Verdean descendant, she is very active in promoting diversity and combating racism across Europe and the EU Institutions, and has inclusion and intersectionality as priorities during her mandate, especially for minorities, people with disabilities and youth.

José

José Willemse is the executive director of the Dutch Liver Patients Association; a member of the management board of the European Reference Network Rare-Liver and a board member of the umbrella organization for liver patients organizations, Liver Patients International. But overall she is a patient advocate pur sang. For her, it is hugely important that patients can keep a grip on their lives through good information and good communication with their healthcare providers. For that, healthcare professionals must know about the patient perspective: what is important for patients to keep a grip on their condition. And that’s her role too: telling the unmet needs of patients to healthcare professionals, whom she admires for their dedication and knowledge.

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Cirrhosis & Complications
EASL Studio Podcast S6 E5: JHEP Live: Should the compensated advanced chronic liver disease (cACLD) concept replace cirrhosis?

EASL Studio Podcast S6 E5: JHEP Live: Should the compensated advanced chronic liver disease (cACLD) concept replace cirrhosis?

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EASL Studio S6 E8: Is there a role for measuring blood ammonia in patients with cirrhosis?

Description

In this episode, the faculty review the evidence base for ammonia measurement in patients with cirrhosis, exploring whether hyperammonaemia is indicative of a poor prognosis and if erroneous measurements correlate with the efficacy of ammonia-lowering therapies. The debate also extends to the use of ammonia as a potential endpoint in randomised controlled trials for hepatic encephalopathy drugs.

Faculty

  • Debbie Shawcross (Moderator)
  • Rajiv Jalan (Faculty)
  • Sara Montagnese (Faculty)
  • Elliot Tapper (Faculty)

This EASL Studio episode is organised in collaboration with the International Society for Hepatic Encephalopathy and Nitrogen Metabolism (ISHEN).

Related episodes

ℹ️ Please click here to access the podcast version of this EASL Studio episode.

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Cirrhosis & Complications
EASL Studio Podcast S6 E8:  Is there a role for measuring blood ammonia in patients with cirrhosis?

EASL Studio Podcast S6 E8: Is there a role for measuring blood ammonia in patients with cirrhosis?

Podcasts
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General Hepatology
EASL Studio Podcast S6 E7: The impact of policy measure in preventing liver diseases: The Hepahealth II study

EASL Studio Podcast S6 E7: The impact of policy measure in preventing liver diseases: The Hepahealth II study

Podcasts
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Liver Tumours
EASL Studio Podcast S6 E4: World Cholangiocarcinoma Day: Highlighting guidelines and exploring the horizon beyond

EASL Studio Podcast S6 E4: World Cholangiocarcinoma Day: Highlighting guidelines and exploring the horizon beyond

Podcasts
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Immune-Mediated and Cholestatic Diseases
Quiz: A 40-year-old male patient has been previously diagnosed with PSC by MRCP and has no concomitant IBD

Quiz: A 40-year-old male patient has been previously diagnosed with PSC by MRCP and has no concomitant IBD

Quiz
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EASL Studio S6 E7: The impact of policy measure in preventing liver diseases: The Hepahealth II study

Description

This episode treats of the Hepahealth II study, which aimed at estimating the impact of policy interventions targeting alcohol and obesity on the incidence of chronic liver disease and primary liver cancer in three European countries. Join our experts in their discussion of this study and of its conclusions.

Faculty

  • Patrizia Burra (Moderator)
  • Maria Buti (Faculty)
  • Peter Jepsen (Faculty)
  • Shira Zelber-Sagi (Faculty)

Related episodes

ℹ️ Please click here to access the podcast version of this EASL Studio episode.

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Immune-Mediated and Cholestatic Diseases
EASL Studio Podcast S6 E6: Alpha-1-antitrypsin deficiency (AATD): A poster child for genetic therapy

EASL Studio Podcast S6 E6: Alpha-1-antitrypsin deficiency (AATD): A poster child for genetic therapy

Podcasts
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EASL Studio S6 E3: How to stop recurrent bleeding due to small-intestinal angiodysplasia?

Description

The participants focus on the topic of managing recurrent bleeding due to small-intestinal angiodysplasia – a persistent challenge encountered by many hepatologists. Our panel explores effective treatments and interventions, including medications like bevacizumab and thalidomide, alongside the role of endoscopy in diagnosis and management.

Faculty

  • Pierre-Emmanuel Rautou (Moderator)
  • Virginia Hernández-Gea (Faculty)
  • Patrick Kamath (Faculty)
  • Wim Laleman (Faculty)

Related episodes:

ℹ️ Please click here to access the podcast version of this EASL Studio episode.

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Liver Tumours
Quiz: A 66-years-old man presents with apparent resectable intrahepatic cholangiocarcinoma (iCCA) at the Hospital.

Quiz: A 66-years-old man presents with apparent resectable intrahepatic cholangiocarcinoma (iCCA) at the Hospital.

Quiz
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General Hepatology

EASL Studio: Challenges and opportunities for patients with PBC: Highlights from EASL Congress 2023.

EASL Studio
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