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Challenges in Transition From Childhood to Adulthood Care in Rare Metabolic Diseases: Results From the First Multi-Center European Survey.
Stepien, Karolina M; Kiec-Wilk, Beata; Lampe, Christina; Tangeraas, Trine; Cefalo, Graziella; Belmatoug, Nadia; Francisco, Rita; Del Toro, Mireia; Wagner, Leona; Lauridsen, Anne-Grethe; Sestini, Sylvia; Weinhold, Nathalie; Hahn, Andreas; Montanari, Chiara; Rovelli, Valentina; Bellettato, Cinzia M; Paneghetti, Laura; van Lingen, Corine; Scarpa, Maurizio.
Afiliação
  • Stepien KM; Adult Inherited Metabolic Diseases, Salford Royal NHS Foundation Trust, Salford, United Kingdom.
  • Kiec-Wilk B; Department of Metabolic Diseases and Diabetes, Krakow University Hospital, Krakow, Poland.
  • Lampe C; Department of Metabolic Diseases, Medical College, Jagiellonian University, Krakow, Poland.
  • Tangeraas T; Department of Child Neurology, Center for Rare Diseases Giessen (ZSEGI), Justus-Liebig University, Giessen, Germany.
  • Cefalo G; Norwegian National Unit for Newborn Screening, Division of Paediatric and Adolescent Medicine, Oslo University Hospital, Oslo, Norway.
  • Belmatoug N; Department of Maternal and Child Health, San Paolo Hospital, University of Milan, ASST Santi Paolo e Carlo, Milan, Italy.
  • Francisco R; Referral Center for Lysosomal Diseases, AP-HP Nord, Beaujon Hospital, Paris University, Clichy, France.
  • Del Toro M; Portuguese Association for Congenital Disorders of Glycosylation and other Rare Metabolic Diseases, Lisbon, Portugal.
  • Wagner L; Pediatric Neurology Department, University Hospital Vall d'Hebron, Universitat Autónoma de Barcelona, Barcelona, Spain.
  • Lauridsen AG; German-Speaking Self-Help Group for Alkaptonuria (DSAKU) e.V., Stuttgart, Germany.
  • Sestini S; International Gaucher Alliance, Dursley, United Kingdom.
  • Weinhold N; Gaucher Association Denmark, Holbaek, Denmark.
  • Hahn A; Italian Association of Patients With Alkaptonuria (aimAKU), Siena, Italy.
  • Montanari C; Metabolic Unit, Interdisciplinary Centre for Metabolism: Endocrinology, Diabetes and Metabolism (UP) and Children's Hospital, Charité University Hospital Berlin, Berlin, Germany.
  • Rovelli V; Department of Child Neurology, Justus-Liebig University, Giessen, Germany.
  • Bellettato CM; Department of Maternal and Child Health, San Paolo Hospital, University of Milan, ASST Santi Paolo e Carlo, Milan, Italy.
  • Paneghetti L; Department of Maternal and Child Health, San Paolo Hospital, University of Milan, ASST Santi Paolo e Carlo, Milan, Italy.
  • van Lingen C; MetabERN, Regional Coordinating Center for Rare Diseases, Udine University Hospital, Udine, Italy.
  • Scarpa M; MetabERN, Regional Coordinating Center for Rare Diseases, Udine University Hospital, Udine, Italy.
Front Med (Lausanne) ; 8: 652358, 2021.
Article em En | MEDLINE | ID: mdl-33738294
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Texto completo: 1 Base de dados: MEDLINE Tipo de estudo: Guideline Idioma: En Ano de publicação: 2021 Tipo de documento: Article
Texto completo
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XML
PubMed Links
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Texto completo: 1 Base de dados: MEDLINE Tipo de estudo: Guideline Idioma: En Ano de publicação: 2021 Tipo de documento: Article