Rare Diseases in the Age of Health 2.0
Editors: Bali, R.K., Bos, L., Gibbons, M.C., Ibell, S.R. (Eds.)
Free Preview- Focuses on various factors associated with orphan diseases
- Highlights the opportunities and challenges through information technologies and Health 2.0
- Explores economic possibilities
- Written by an international authorship with experience and competencies in the key areas of patient empowerment, healthcare and clinical knowledge management, healthcare inequalities and disparities, rare diseases and patient advocacy
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- About this book
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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.
- About the authors
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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.
- Table of contents (29 chapters)
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Why R&D into Rare Diseases Matter
Pages 3-20
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Vignette: Autoimmune Polyendocrine Syndrome Type I (APS 1)
Pages 21-25
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Rare Diseases: How Genomics has Transformed Thinking, Diagnoses and Hope for Affected Families
Pages 27-38
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Vignette: A Giant of a Man: Simon Ibell (MPS II)
Pages 39-41
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Innovative Funding Models for Rare Diseases
Pages 43-50
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Table of contents (29 chapters)
- Download Preface 1 PDF (110.6 KB)
- Download Sample pages 2 PDF (257 KB)
- Download Table of contents PDF (92.6 KB)
Bibliographic Information
- Bibliographic Information
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- Book Title
- Rare Diseases in the Age of Health 2.0
- Editors
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- Rajeev K. Bali
- Lodewijk Bos
- Michael Christopher Gibbons
- Simon R. Ibell
- Series Title
- Communications in Medical and Care Compunetics
- Series Volume
- 4
- Copyright
- 2014
- Publisher
- Springer-Verlag Berlin Heidelberg
- Copyright Holder
- Springer-Verlag Berlin Heidelberg
- eBook ISBN
- 978-3-642-38643-5
- DOI
- 10.1007/978-3-642-38643-5
- Hardcover ISBN
- 978-3-642-38642-8
- Softcover ISBN
- 978-3-662-52233-2
- Series ISSN
- 2191-3811
- Edition Number
- 1
- Number of Pages
- XXXIII, 292
- Number of Illustrations
- 14 b/w illustrations
- Topics
