Caring for patients with Alagille syndrome: a multinational survey investigating the mental health and financial burden on caregivers-Reference-Cited by-同舟云学术

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Caring for patients with Alagille syndrome: a multinational survey investigating the mental health and financial burden on caregivers

Published:2024-09-05 Issue:1 Volume:4 Page:
ISSN:2399-5270
Container-title:Future Rare Diseases
language:en
Short-container-title:Future Rare Diseases

Author:

Lurz Eberhard¹^ORCID,Laborde Nolwenn²^ORCID,Smith Roberta³,Bork Cher³,Dorey Laure⁴,Howard Robin⁵^ORCID,Quadrado Lucia⁵,Lacey Guy⁵,Terner-Rosenthal Jolan⁵,Goldstein Andrea⁵^ORCID,Gallop Katy⁶^ORCID,Rosenthal Philip⁷^ORCID

Affiliation:

1. Department of Paediatrics, Dr. von Hauner Children’s Hospital, University Hospital, LMU Munich, Munich, Germany

2. Hopital Des Enfants-CHU Toulouse, Toulouse, France

3. Alagille Syndrome Alliance, Collierville, TN 38027, USA

4. Association Maladies Foie Enfants, Paris, France

5. Mirum Pharmaceuticals, Inc., Foster City, CA 94404, USA

6. Acaster Lloyd Consulting Ltd., London, UK

7. Departments of Pediatrics & Surgery, University of California, San Francisco, San Francisco, CA 94143, USA

Funder

Mirum Pharmaceuticals, Inc.

Publisher

Informa UK Limited

Link

https://www.tandfonline.com/doi/pdf/10.1080/23995270.2024.2394010

Reference37 articles.

1. Systematic Review: The Epidemiology, Natural History, and Burden of Alagille Syndrome

2. Alagille syndrome: clinical perspectives

3. Alagille syndrome: pathogenesis, diagnosis and management

4. Kamath BM, Spinner NB, Piccoli DA, et al. Alagille syndrome. In: Suchy FJ, Sokol RJ, Balistreri WF, editors. Liver disease in children. 5th ed. Cambridge: Cambridge University Press; 2021.

5. Clinical utility gene card for: Alagille Syndrome (ALGS)

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