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
Every year, Rare Liver Diseases Month brings a fresh focus to one of the critical challenges faced by those living with rare liver diseases. In February, our council comes together to not only raise awareness, but also drive changes needed to address these challenges. This campaign features a mix of education, patient-centered resources, and advocacy initiatives, all aimed at addressing the most urgent needs. The 2025 #RareAware Campaign aims to address the inequities faced by those living with rare liver diseases in rural communities.
Representing Liver in Rare Disease Advisory Council (RDAC)
Rare Disease Advisory Councils (RDAC) are state-level bodies that provide guidance and advocacy for the rare disease community to help shape policy and improve care for patients. Building on the strong foundation set by NORD, our collaborative efforts are focused on amplifying the voices of rare liver disease patients within the broader rare disease conversation across RDAC nationwide. Currently, our council has representation in Mississippi, Tennessee, and Illinois and is working to bring more liver disease representation in the other 25 existing RDAC.
Driving Changes in Legislations
Our council is dedicated to advancing disease-agnostic policies that are grounded in research and informed by the latest evidence. We strive to keep our efforts aligned with the priorities of the rare disease community, ensuring our council remains at the forefront of policy pushes. In 2024, the pediatric and rare liver diseases council worked to advocate for initiatives like:
- Medical Nutrition Equity Act (H.R.6892)
- ORPHAN Cures Act (H.R.5539)
- Accelerating Kids Access to Care Act (H.R. 4758/S. 2372)
- Creating Hope Reauthorization Act of 2024 (H.R.7384)
- And More!
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.
