Global Liver Institute
Pediatric & Rare Liver Diseases Council
GLOBAL LIVER INSTITUTE
Pediatric & Rare Liver Diseases 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.
Goals of the Pediatric & Rare Liver Diseases Council
Elevate the visibility and voice of the pediatric and rare liver diseases community
Collaborations
Rare Liver Diseases Month
The 2023 #RareAware campaign focuses on Pregnancy and Parenthood.
During such a critical and transformative time for a family, liver disease can become an overwhelming curveball, especially if it’s discovered late.
This campaign features education, patient empowerment, roundtable discussions, and more in order to support the many patients living with rare diseases and their caregivers.
Conquering Cholestatic Pruritus
In this webinar, you will learn about:
- 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.
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 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
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.
