XLH Matters: an evolving programme to discuss new advances and share clinical experiences to improve patient outcomes

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Main Authors: Lothar Seefried, Ferdinando Aliberti, Cathrine Alsaker Heier, Pedro Arango-Sancho, Martin Biosse Duplan, Sophia D. Sakka, Francesco Emma, Oliver Gardiner, Muhammad Kassim Javaid, Rui M. Ferreira-Santos, Adalbert Raimann, Kristen Rak, Judith S. Bubbear, Moira S. Cheung, Signe Sparre Beck-Nielsen, Gabriel T. Mindler, Agnès Linglart
Format: Article
Language:English
Published: BMC 2025-02-01
Series:Orphanet Journal of Rare Diseases
Online Access:https://doi.org/10.1186/s13023-024-03387-4
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author Lothar Seefried
Ferdinando Aliberti
Cathrine Alsaker Heier
Pedro Arango-Sancho
Martin Biosse Duplan
Sophia D. Sakka
Francesco Emma
Oliver Gardiner
Muhammad Kassim Javaid
Rui M. Ferreira-Santos
Adalbert Raimann
Kristen Rak
Judith S. Bubbear
Moira S. Cheung
Signe Sparre Beck-Nielsen
Gabriel T. Mindler
Agnès Linglart
author_facet Lothar Seefried
Ferdinando Aliberti
Cathrine Alsaker Heier
Pedro Arango-Sancho
Martin Biosse Duplan
Sophia D. Sakka
Francesco Emma
Oliver Gardiner
Muhammad Kassim Javaid
Rui M. Ferreira-Santos
Adalbert Raimann
Kristen Rak
Judith S. Bubbear
Moira S. Cheung
Signe Sparre Beck-Nielsen
Gabriel T. Mindler
Agnès Linglart
author_sort Lothar Seefried
collection DOAJ
format Article
id doaj-art-4e634ffb1be541f2a58959d4d494c366
institution Kabale University
issn 1750-1172
language English
publishDate 2025-02-01
publisher BMC
record_format Article
series Orphanet Journal of Rare Diseases
spelling doaj-art-4e634ffb1be541f2a58959d4d494c3662025-02-09T12:53:59ZengBMCOrphanet Journal of Rare Diseases1750-11722025-02-0119S212010.1186/s13023-024-03387-4XLH Matters: an evolving programme to discuss new advances and share clinical experiences to improve patient outcomesLothar Seefried0Ferdinando Aliberti1Cathrine Alsaker Heier2Pedro Arango-Sancho3Martin Biosse Duplan4Sophia D. Sakka5Francesco Emma6Oliver Gardiner7Muhammad Kassim Javaid8Rui M. Ferreira-Santos9Adalbert Raimann10Kristen Rak11Judith S. Bubbear12Moira S. Cheung13Signe Sparre Beck-Nielsen14Gabriel T. Mindler15Agnès Linglart16Orthopedic Institute, König-Ludwig Haus, University of WürzburgCraniofacial Unit, Neurosurgical Department, Santobono Children’s HospitalPediatric Department, Oslo University HospitalDepartment of Pediatric Nephrology, Hospital Sant Joan de DéuUFR Odontologie, Université Paris CitéDivision of Endocrinology, Metabolism, and Diabetes, First Department of Pediatrics, ENDO-ERN Center for Rare Pediatric Endocrine Disorders, National and Kapodistrian University of Athens Medical School, “Aghia Sophia” Children’s HospitalDivision of Nephrology, Bambino Gesù Children’s Hospital—IRCCSInternational XLH AllianceNuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of OxfordEvelina London Children’s Hospital/Guy’s and St Thomas’ NHS Foundation TrustDivision of Pediatric Pulmonology, Department of Pediatrics and Adolescent Medicine, Allergology and Endocrinology, Medical University of ViennaDepartment of Oto-Rhino-Laryngology, Plastic, Aesthetic and Reconstructive Head and Neck Surgery and the Comprehensive Hearing Center, University of WuerzburgRoyal National Orthopaedic HospitalGreat Ormond Street Hospital, NHS Foundation TrustCentre for Rare Diseases, Aarhus University Hospital and Department of Clinical Research, Aarhus UniversityVienna Bone and Growth CenterAPHP, Endocrinology and Diabetology for Children, Bicêtre Paris Sud Hospitalhttps://doi.org/10.1186/s13023-024-03387-4
spellingShingle Lothar Seefried
Ferdinando Aliberti
Cathrine Alsaker Heier
Pedro Arango-Sancho
Martin Biosse Duplan
Sophia D. Sakka
Francesco Emma
Oliver Gardiner
Muhammad Kassim Javaid
Rui M. Ferreira-Santos
Adalbert Raimann
Kristen Rak
Judith S. Bubbear
Moira S. Cheung
Signe Sparre Beck-Nielsen
Gabriel T. Mindler
Agnès Linglart
XLH Matters: an evolving programme to discuss new advances and share clinical experiences to improve patient outcomes
Orphanet Journal of Rare Diseases
title XLH Matters: an evolving programme to discuss new advances and share clinical experiences to improve patient outcomes
title_full XLH Matters: an evolving programme to discuss new advances and share clinical experiences to improve patient outcomes
title_fullStr XLH Matters: an evolving programme to discuss new advances and share clinical experiences to improve patient outcomes
title_full_unstemmed XLH Matters: an evolving programme to discuss new advances and share clinical experiences to improve patient outcomes
title_short XLH Matters: an evolving programme to discuss new advances and share clinical experiences to improve patient outcomes
title_sort xlh matters an evolving programme to discuss new advances and share clinical experiences to improve patient outcomes
url https://doi.org/10.1186/s13023-024-03387-4
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