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The organizational dimension in rare and complex diseases care management: an application of RarERN Path© methodology in ataxias, dystonia and phenylketonuria.

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Title: The organizational dimension in rare and complex diseases care management: an application of RarERN Path© methodology in ataxias, dystonia and phenylketonuria.
Authors: Cannizzo S; Institute of Management, Scuola Superiore Sant'Anna, Piazza Martiri della Libertà 33, Pisa, 56127, Italy., Quoidbach V; European Brain Council, Bruxelles, Belgium.; University of Warwick, Coventry, England, UK., Trieste L; Institute of Management, Scuola Superiore Sant'Anna, Piazza Martiri della Libertà 33, Pisa, 56127, Italy., Benson M; Dystonia Europe, Bruxelles, Belgium., Federico A; Department of Medicine, Surgery and Neurosciences, Medical School, University of Siena, Siena, Italy., Filla A; Department of Neurosciences, Reproductive and Odontostomatological Sciences, Federico II University, Naples, Italy., Gilroy BS; PKU Association of Ireland, Tralee, Ireland.; Munster Technological University Kerry Campus, Tralee, Ireland., Giunti P; Ataxia Centre, Department of Clinical and Movement Neurosciences, UCL Queen Square Institute of Neurology, Queen Square House, Queen Square, London, WC1 N 3BG, UK., Graeßner H; Institute for Medical Genetics and Applied Genomics, University of Tübingen, Tübingen, Germany.; Centre for Rare Diseases, University Hospital Tübingen, Tübingen, Germany.; European Reference Network, ERN RND, Tübingen, Germany., Greenfield J; Ataxia UK, London, UK., Hagedorn T; German PKU and Allied Disorders Patients Association DIG PKU, Hiddenhausen, Germany.; European Society for Phenylketonuria & Allied Disorders, Wagram, Austria., Hermida A; Unit of Diagnosis and Treatment of Congenital Metabolic Diseases, Department of Internal Medicine, Santiago de Compostela University Clinical Hospital, Santiago de Compostela, Spain., Hunt B; Ataxia UK, London, UK., MacDonald A; Dietetic Department, Birmingham Children's Hospital, Steelhouse Lane, Birmingham, UK., Morgante F; Neuromodulation and Motor Control Section, Neuroscience and Cell Biology Institute, City St George's, University of London, London, UK., Oertel W; European Brain Council, Bruxelles, Belgium.; Philipps-Universitaet Marburg, Marburg, Germany., Pastores G; National Centre for inherited Metabolic Disorders, Mater Misericordiae University Hospital, Dublin, Ireland., Pauly MG; Department of Neurology, University Hospital Schleswig Holstein Campus Lübeck, Lübeck, Germany., Reinhard C; Institute for Medical Genetics and Applied Genomics, University of Tübingen, Tübingen, Germany.; Centre for Rare Diseases, University Hospital Tübingen, Tübingen, Germany.; European Reference Network, ERN RND, Tübingen, Germany., Relja M; University of Zagreb Medical School and Croatian Academy of Medical Science, Zagreb, Croatia., Treacy E; National Centre for inherited Metabolic Disorders, Mater Misericordiae University Hospital, Dublin, Ireland.; School of Medicine, University College Dublin, Dublin, Ireland.; School of Medicine, Trinity College Dublin, Dublin, Ireland., Van Spronsen F; Metabolic Diseases in the Beatrix Children's Hospital of the University Medical Center of Groningen, Groningen, Netherlands.; European Reference Network, MetabERN, Udine, Italy., Vallortigara J; Ataxia Centre, Department of Clinical and Movement Neurosciences, UCL Queen Square Institute of Neurology, Queen Square House, Queen Square, London, WC1 N 3BG, UK., Turchetti G; Institute of Management, Scuola Superiore Sant'Anna, Piazza Martiri della Libertà 33, Pisa, 56127, Italy. g.turchetti@santannapisa.it.
Source: BMC health services research [BMC Health Serv Res] 2025 Jun 04; Vol. 25 (1), pp. 799. Date of Electronic Publication: 2025 Jun 04.
Publication Type: Journal Article
Journal Info: Publisher: BioMed Central Country of Publication: England NLM ID: 101088677 Publication Model: Electronic Cited Medium: Internet ISSN: 1472-6963 (Electronic) Linking ISSN: 14726963 NLM ISO Abbreviation: BMC Health Serv Res Subsets: MEDLINE
Database: MEDLINE Ultimate
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  Data: The organizational dimension in rare and complex diseases care management: an application of RarERN Path<superscript>©</superscript> methodology in ataxias, dystonia and phenylketonuria.
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