Alagille syndrome Advocacy Hub | UniteRare

At a Glance

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Regulatory Watchboard

8 events

Mar 2026Management of Steatorrhea in Children and Young Adults With Alagille Syndrome After Liver Transplantation

Digestive Care, Inc. — PHASE2

TrialNOT YET RECRUITING

Mar 2026Pediatric Evaluation and Registry for Liver Cholestasis in Canada

Children's Hospital of Eastern Ontario

TrialNOT YET RECRUITING

Jan 2026A Database Study of Maralixibat (TAK-625) in Participants With Alagille Syndrome (ALGS) and Progressive Familial Intrahepatic Cholestasis (PFIC)

Takeda

TrialRECRUITING

Dec 2025Dental Dyschromia and Quality of Life in Early Prolonged Hyperbilirubinemia

University Hospital, Toulouse

TrialNOT YET RECRUITING

Sep 2025Long-Term Low-Intervention SafEty and Clinical Outcomes Clinical Study of LivmArli® in Patients With Alagille Syndrome in the European Union (LEAP-EU)

Mirum Pharmaceuticals, Inc. — PHASE4

TrialRECRUITING

Apr 2025A Study Observing the Long-term, Effectiveness and Safety of Odevixibat (Bylvay) in Patients With Alagille Syndrome (ALGS) Who Are Receiving Ongoing Treatment

Ipsen

TrialRECRUITING

Sep 2023Long-Term SafEty and Clinical Outcomes of LivmArli in Patients in the United States (LEAP-US)

Mirum Pharmaceuticals, Inc.

TrialRECRUITING

Sep 2021Long-term Safety and Efficacy of Odevixibat in Patients With Alagille Syndrome

Albireo, an Ipsen Company — PHASE3

TrialRECRUITING

Data from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Financial Assistance

3 programs

FINANCIAL LANDSCAPE SUMMARY

Total programs

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Copay cards

Travel grants

Copay Assistance1

Livmarli

Mirum

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Travel Grants2

HealthWell Foundation Financial Assistance Programs

HealthWell Foundation

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HealthWell Foundation Patient Assistance Programs

HealthWell Foundation

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Clinical Trial Landscape

5 active trials

1Phase 3

1Phase 4

3Unknown

5Total recruiting

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Recent News & Research

1 article

Hepatol IntMar 21, 2026

AGEX: a comprehensive database of clinically relevant genetic variants associated with Alagille syndrome across diverse populations

Published in Hepatol Int. Sharma P et al.

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Specialist Network

Top 6 by expertise

Pamela Vig

Mirum Pharmaceuticals

Score 03 pubs

Binita M Kamath

The Hospital for Sick Children

Score 05 pubs

Florence Lacaille

Necker-Enfants Malades Hospital

Score 04 pubs

Emmanuel Jacquemin

Centre de Référence de l'Atrésie des Voies Biliaires et des Cholestases Génétiques (AVB-CG)

Score 04 pubs

Kathleen M Loomes, M.D

The Children's Hospital of Philadelphia and the University of Pennsylvania Perelman School of Medicine

📍 PHILADELPHIA, PA

Score 03 pubs

Will Garner

Mirum Pharmaceuticals

Score 03 pubs

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Financial Assistance

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