Global Liver Institute

Pediatric & Rare Liver Diseases Council

GLOBAL LIVER INSTITUTE

Pediatric & Rare Liver Diseases Council
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Peds & Rare Overview

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Pediatric & Rare Liver Diseases Council

Global Liver Institute formed the Pediatric and Rare Liver Diseases Council in November 2020. Global Liver Institute’s Pediatric and Rare Liver Diseases Council brings together non-profit, for-profit, government, and patient representatives who are committed to addressing the challenges and impact of pediatric and rare liver diseases on individuals, communities, and organizations around the world.

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Goals of the Pediatric & Rare Liver Diseases Council

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Elevate the visibility and voice of the pediatric and rare liver diseases community

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Strengthen the organizational infrastructure of pediatric and rare liver diseases organizations
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Advance the policy agenda in pediatric and rare liver diseases
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Identify common elements to accelerate research in pediatric and rare liver diseases

Collaborations

Conquering Cholestatic Pruritus (11 October 2022)

Conquering Cholestatic Pruritus

Join us in this three part conversation: 

  • The itching experience spotlights patients who have experienced itchy skin as a result of the liver disease. 
  • Our itch myth busting and management segment curates a list of self-care and self-management tools for pruritus patients to use as a means of preventing skin irritations as a result of itching. 
  • Current work in the clinical and therapeutic strategies.

Register today!

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Rare Liver Diseases Month

The 2022 iteration of this annual campaign raised awareness about different rare disease like Alagille Syndrome, Wilson’s Disease, Cystic Fibrosis, and more through activities like GLI LIVE and Instagram takeovers and provided spaces for pediatric and adult patients to discuss their experiences weekly.

Sponsored by: CymaBay, Mirum, Intercept, & Travere

GLI PBC EL PFDD Slide Deck

PBC EL-PFDD

This day-long meeting created an opportunity in the PBC community to come together to highlight the unmet needs in care, therapies, and clinical trial arena to regulators and to multiple stakeholders with an interest in PBC. 

In collaboration with: PBC Foundation, PBCers, & Canadian PBC Society

Living With Rare Liver Disease

Living with Rare Liver Disease in Europe

GLI hosted an EU policy event in pediatric liver disease that brought together speakers from Italy, Austria, Germany, the UK, and the Netherlands to highlight patient and caregiver experience when living with a pediatric liver disease.

Endorsed by: EASL, LPI, & PBC Foundation

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Upcoming Events

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November Council Meeting 2022

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Rare Liver Disease Month 2023
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May Council Meeting 2023

Membership

Global Liver Institute’s Pediatric and Rare Liver Diseases Council brings together non-profit, for-profit, government, and patient representatives who are committed to addressing the challenges and impact of pediatric and rare liver diseases on individuals, communities, and organizations around the world.

Membership