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© 2014

Rare Diseases in the Age of Health 2.0

  • Rajeev K. Bali
  • Lodewijk Bos
  • Michael Christopher Gibbons
  • Simon Ibell
Book

Part of the Communications in Medical and Care Compunetics book series (CMCC, volume 4)

Table of contents

  1. Front Matter
    Pages i-xxxiii
  2. Rare and Orphan Diseases

    1. Front Matter
      Pages 1-1
    2. Remco L. A. de Vrueh
      Pages 3-20
    3. Pierre Meulien, Paul Lasko, Alex MacKenzie, Cindy Bell, Kym Boycott
      Pages 27-38
    4. Amanda Lordemann, Krissi Danielsson, Jimmy Cheng-Ho Lin
      Pages 43-50
    5. Angela Covato
      Pages 67-70
    6. Sylvie Grégoire, Norman Barton, David Whiteman
      Pages 71-80
  3. Health 2.0

  4. Patient Perspectives and Empowerment Issues

About this book

Introduction

This text focuses on various factors associated with orphan diseases and the influence and role of health information technologies. Orphan diseases have not been adopted by the pharmaceutical industry because they provide little financial incentive to treat or prevent it. It is estimated that 6,000-7,000 orphan diseases exist today; as medical knowledge continues to expand, this number is likely to become much greater.  The book highlights the opportunities and challenges in this increasingly important area. The book explores new avenues which are opened by information technologies and Health 2.0, and highlights also economic opportunities of orphan disease medicine.
The editors of this new book have international experience and competencies in the key areas of patient empowerment, healthcare and clinical knowledge management, healthcare inequalities and disparities, rare diseases and patient advocacy.

Keywords

Disease Data Mining Electronic Health Records Electronic Health Records Genomics and Biotechnology Health 2.0 Health Data Mining Health Social Media Information Management Systems Innovative Therapies Patient Empowerment and Advocacy Patient-clinician Liaison Rare Diseases Role of New Social Media

Editors and affiliations

  • Rajeev K. Bali
    • 1
  • Lodewijk Bos
    • 2
  • Michael Christopher Gibbons
    • 3
  • Simon Ibell
    • 4
  1. 1.Health Design and Technology InstituteCoventry UniversityCoventryUnited Kingdom
  2. 2.International Council on Medical & Care Compunetics (ICMCC)UtrechtThe Netherlands
  3. 3.Johns Hopkins Urban Health InstituteBaltimoreUSA
  4. 4.iBellieve FoundationTorontoCanada

About the editors

Drs Lodewijk Bos is founder and president of the International Council on Medical and Care Compunetics (ICMCC), an international foundation operating as the knowledge centre for medical and care compunetics (COMPUting & Networking, its EThICs and Social/societal implications). He is E-i-C of the Springer Journal "Health and Technology" and series editor of "Communications in Medical and Care Compunetics". Dr Rajeev K Bali is a Reader in Healthcare Knowledge Management at Coventry University, UK. His main research interests lie in clinical and healthcare knowledge management. He is well published in peer reviewed journals and conferences and has been invited internationally to deliver presentations and speeches. Dr M Chris Gibbons MD is Associate Director of the Johns Hopkins Urban Health Institute and an Assistant Professor at the Johns Hopkins Schools of Medicine and Public Health. He is an urban health expert and informatician who works primarily in the area of consumer health informatics where he focuses on using health information and communications technologies to improve urban healthcare disparities. Simon Ibell is an advocate for human potential and a role model for persons with disabilities. Ibell’s condition, known as MPS II (mucopolysaccharidosis) or Hunter syndrome, is rare and is the result of an enzyme deficiency, which affects most of his major organs, his joints, and is both painful and debilitating. The iBellieve Foundation is Simon’s official organization that aims to conquer MPS II and related Lysosomal Storage Disorders.

Bibliographic information

  • Book Title Rare Diseases in the Age of Health 2.0
  • Editors Rajeev K. Bali
    Lodewijk Bos
    Michael Christopher Gibbons
    Simon Ibell
  • Series Title Communications in Medical and Care Compunetics
  • Series Abbreviated Title Communicat.Med.,Care Compunetics
  • DOI https://doi.org/10.1007/978-3-642-38643-5
  • Copyright Information Springer-Verlag Berlin Heidelberg 2014
  • Publisher Name Springer, Berlin, Heidelberg
  • eBook Packages Engineering Engineering (R0)
  • Hardcover ISBN 978-3-642-38642-8
  • Softcover ISBN 978-3-662-52233-2
  • eBook ISBN 978-3-642-38643-5
  • Series ISSN 2191-3811
  • Series E-ISSN 2191-382X
  • Edition Number 1
  • Number of Pages XXXIII, 292
  • Number of Illustrations 14 b/w illustrations, 0 illustrations in colour
  • Topics Biomedical Engineering and Bioengineering
    Health Informatics
    Health Informatics
    Health Economics
  • Buy this book on publisher's site