18be452ff15f02a96811c5f3d2dcf260 pmc_33519696.pdf c314910b9011f9cb43e351b46b25f00b1046b9b8 pmc_33519696.pdf 95f83bad639107489195e7d23fb43cdc75c4103226ebbd8f4c03fc4e8348beb0 pmc_33519696.pdf Title: The European Reference Network for Rare Neurological Diseases Subject: While rare diseases (RDs) are by definition of low prevalence, the total number of patients suffering from an RD is high, and the majority of them have neurologic manifestations, involving central, peripheral nerve, and muscle. Keywords: rare neurological diseases, standards of care, training and education, virtual healthcare, European reference network Author: Holm Graessner Creator: LaTeX with hyperref package + hypdvips Producer: dvips + MiKTeX GPL Ghostscript 9.0 CreationDate: Wed Jan 6 02:51:36 2021 CET ModDate: Wed Jan 6 07:11:11 2021 CET Tagged: no UserProperties: no Suspects: no Form: none JavaScript: no Pages: 7 Encrypted: no Page size: 595.26 x 779.52 pts Page rot: 0 File size: 450320 bytes Optimized: no PDF version: 1.6 name type encoding emb sub uni object ID ------------------------------------ ----------------- ---------------- --- --- --- --------- SNSAJT+HelveticaNeueLTStd-Bd Type 1C WinAnsi yes yes no 32 0 PGKIBD+HelveticaNeueLTStd-Lt Type 1C Custom yes yes no 37 0 PIAOFJ+HelveticaNeueLTStd-BdIt Type 1C WinAnsi yes yes no 50 0 TZPDBQ+HelveticaNeueLTStd-LtIt Type 1C Custom yes yes no 52 0 TRTYNK+HelveticaNeueLTStd-MdIt Type 1C WinAnsi yes yes no 58 0 LGDGPO+MinionPro-Regular Type 1C Custom yes yes no 66 0 GBAUGV+RMTMI Type 1C WinAnsi yes yes no 68 0 HFOCDT+MinionPro-Bold Type 1C Custom yes yes no 89 0 JBGRKI+MinionPro-It Type 1C Custom yes yes no 151 0 Jhove (Rel. 1.22.1, 2019-04-17) Date: 2023-05-27 02:49:28 CEST RepresentationInformation: pmc_33519696.pdf ReportingModule: PDF-hul, Rel. 1.12.1 (2019-04-17) LastModified: 2023-03-31 12:08:44 CEST Size: 450320 Format: PDF Version: 1.6 Status: Well-Formed and valid SignatureMatches: PDF-hul MIMEtype: application/pdf PDFMetadata: Objects: 196 FreeObjects: 12 IncrementalUpdates: 0 DocumentCatalog: ViewerPreferences: HideToolbar: false HideMenubar: false HideWindowUI: false FitWindow: true CenterWindow: false DisplayDocTitle: false NonFullScreenPageMode: UseNone Direction: L2R ViewArea: CropBox ViewClip: CropBox PrintArea: CropBox PageClip: CropBox PageLayout: SinglePage PageMode: UseOutlines Language: en Outlines: Item: Title: The European Reference Network for Rare Neurological Diseases Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@4d3167f4 Children: Item: Title: Introduction Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@ed9d034 Children: Item: Title: Rare Diseases in Europe—The Current Situation and Challenges Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@6121c9d6 Item: Title: European Reference Networks for Rare Diseases Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@87f383f Item: Title: Travel of Knowledge Put Into Practice—The Clinical Patient Management System Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@4eb7f003 Item: Title: The European Reference Network for Rare Neurological Diseases Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@eafc191 Item: Title: RND Diagnostic Pathways Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@612fc6eb Item: Title: Expert RND Care Coordination Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@1060b431 Item: Title: Training, Education, and Capacity Building Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@612679d6 Item: Title: Information Sharing and Disease Resources Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@11758f2a Item: Title: Guidelines, Pathways, and Best Practice Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@e720b71 Item: Title: Registries and Research Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@1b26f7b2 Item: Title: Pediatric Issues Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@491cc5c9 Item: Title: Neurorehabilitation Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@74ad1f1f Item: Title: Monitoring and Evaluation of ERN-RND Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@6a1aab78 Item: Title: Discussion and Conclusions Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@462d5aee Item: Title: Author Contributions Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@69b0fd6f Item: Title: Acknowledgments Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@757942a1 Item: Title: Supplementary Material Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@4a87761d Item: Title: References Destination: edu.harvard.hul.ois.jhove.module.pdf.PdfSimpleObject@66d1af89 Info: Title: The European Reference Network for Rare Neurological Diseases Author: Holm Graessner Subject: While rare diseases (RDs) are by definition of low prevalence, the total number of patients suffering from an RD is high, and the majority of them have neurologic manifestations, involving central, peripheral nerve, and muscle. 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