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Patient Preference and Adherence Volume 17, 2023 - Issue
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ORIGINAL RESEARCH

Young XLH Patients-Reported Experience with a Supportive Care Program

Anya Rothenbuhler1 AP-HP, INSERM, Endocrinology and Diabetes for Children, Physiologie et Physiopathologie Endocriniennes, Reference Center for Rare Disorders of Calcium and Phosphate Metabolism, Filière OSCAR, and Platform of Expertise for Rare Disorders, ERN for Rare Endocrine Disorders and ERN BOND, Bicêtre Paris Saclay Hospital, Le Kremlin-Bicêtre, FranceView further author information
,
Iva Gueorguieva2 Pediatric Endocrine Unit Children’s Hospital Jeanne de Flandre, Lille University Hospital, Lille, FranceView further author information
,
Lydia Lichtenberger-Geslin3 Pediatric Department, Abbeville Hospital, Abbeville, FranceView further author information
,
Christelle Audrain1 AP-HP, INSERM, Endocrinology and Diabetes for Children, Physiologie et Physiopathologie Endocriniennes, Reference Center for Rare Disorders of Calcium and Phosphate Metabolism, Filière OSCAR, and Platform of Expertise for Rare Disorders, ERN for Rare Endocrine Disorders and ERN BOND, Bicêtre Paris Saclay Hospital, Le Kremlin-Bicêtre, FranceView further author information
,
Sylvie Soskin4 Pediatric Department, Strasbourg University Hospital, Strasbourg, FranceView further author information
,
Candace Bensignor5 Departement of Endocrino-Pediatry, Dijon University Hospital, Dijon, FranceView further author information
,
Sylvie Rossignol4 Pediatric Department, Strasbourg University Hospital, Strasbourg, FranceORCID Iconhttps://orcid.org/0000-0003-1268-0632View further author information
ORCID Icon,
Aurélia Bertholet-Thomas6 Pediatric Nephrology, Rheumatology, and Dermatology Unit, Reference Center for Rare Diseases of Calcium and Phosphate Metabolism, Reference Center for Rare Renal Diseases, Filières Maladies Rares OSCAR ORKiD and ERK-Net, INSERM 1033, Hôpital Femme Mère Enfant, Faculté de Médecine Lyon Est, Bron, FranceView further author information
,
Lorelei Naudeau7 Patientys-Webhelp Medica, Boulogne-Billancourt, FranceCorrespondence[email protected]
View further author information
,
Justine Bacchetta6 Pediatric Nephrology, Rheumatology, and Dermatology Unit, Reference Center for Rare Diseases of Calcium and Phosphate Metabolism, Reference Center for Rare Renal Diseases, Filières Maladies Rares OSCAR ORKiD and ERK-Net, INSERM 1033, Hôpital Femme Mère Enfant, Faculté de Médecine Lyon Est, Bron, FranceORCID Iconhttps://orcid.org/0000-0002-0578-2529View further author information
ORCID Icon &
Agnès Linglart1 AP-HP, INSERM, Endocrinology and Diabetes for Children, Physiologie et Physiopathologie Endocriniennes, Reference Center for Rare Disorders of Calcium and Phosphate Metabolism, Filière OSCAR, and Platform of Expertise for Rare Disorders, ERN for Rare Endocrine Disorders and ERN BOND, Bicêtre Paris Saclay Hospital, Le Kremlin-Bicêtre, France;8 Paris Saclay University, Bicêtre Paris Saclay Hospital, Le Kremlin-Bicêtre, FranceORCID Iconhttps://orcid.org/0000-0003-3455-002XView further author information
ORCID Icon show all
Pages 1393-1405 | Received 23 Sep 2022, Accepted 03 May 2023, Published online: 09 Jun 2023

References

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