Rare Diseases in the Age of Health 2.0

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

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

  5. Closing Gaps: Promising Research and Future Considerations

    1. Front Matter
      Pages 213-213
    2. Jeneva Stone
      Pages 237-240
    3. Kyle Boyd, Chris Nugent, Mark Donnelly, Raymond Bond, Roy Sterritt
      Pages 241-261
    4. Jeneva Stone
      Pages 279-281
    5. Rashmi Gopal-Srivastava, Stephen C. Groft
      Pages 283-290
  6. Back Matter
    Pages 291-292

About this book


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.


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

Bibliographic information

  • DOI
  • Copyright Information Springer-Verlag Berlin Heidelberg 2014
  • Publisher Name Springer, Berlin, Heidelberg
  • eBook Packages Engineering
  • Print ISBN 978-3-642-38642-8
  • Online ISBN 978-3-642-38643-5
  • Series Print ISSN 2191-3811
  • Series Online ISSN 2191-382X
  • Buy this book on publisher's site