Public Policy in ALS/MND Care: The Belgian Perspective
Belgium has a population of 11 million people, which means that there should be 110–220 ALS cases per year and that there are 440 to 880 people living with ALS. There is no population-based national registry for ALS, but a national database for neuromuscu
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ublic Policy in ALS/MND Care
Robert H. Blank Jerome E. Kurent • David Oliver Editors
Public Policy in ALS/MND Care An International Perspective
Editors Robert H. Blank University of Canterbury, Christchurch, New Zealand
Jerome E. Kurent Medical University of South Carolina Charleston, SC, USA
David Oliver University of Kent Canterbury, UK
ISBN 978-981-15-5839-9 ISBN 978-981-15-5840-5 (eBook) https://doi.org/10.1007/978-981-15-5840-5 © The Editor(s) (if applicable) and The Author(s), under exclusive licence to Springer Nature Singapore Pte Ltd. 2021 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. Cover illustration: © Ed Reschke/Getty Images This Palgrave Macmillan imprint is published by the registered company Springer Nature Singapore Pte Ltd. The registered company address is: 152 Beach Road, #21-01/04 Gateway East, Singapore 189721, Singapore
Foreword
When I was a neuromuscular fellow back in 1980, I would observe how my mentors, Drs. Walter G. Bradley and Theodore L. Munsat, managed their ALS Clinic and early clinical trials. Because I was concentrating on basic research, I did not know the factors involved in running clinical programs. I have to admit I did not pay much attention to administration, as these issues were neither clinical nor scientific. A few years later when I wanted to start a multidisciplinary ALS Clinic, I struggled to learn how to do it successfully. This knowledge was clearly over my head. When I wanted to conduct my first clinical trial with thyrotropin- releasing hormone (TRH), I would not have been able to accomplish this task without the support and assistance of my chairman Dr. John P. Conomy and his capable administrative assistant. I learned and started this process from scratch. In those days, public policies and the overall infrastructure for ALS was still in the early stages of develo
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