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Rare Diseases in the Age of Health 2.0

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Cover of 'Rare Diseases in the Age of Health 2.0'

Table of Contents

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    Book Overview
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    Chapter 1 Why R&D into Rare Diseases Matter
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    Chapter 2 Vignette: Autoimmune Polyendocrine Syndrome Type I (APS 1)
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    Chapter 3 Rare Diseases: How Genomics has Transformed Thinking, Diagnoses and Hope for Affected Families
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    Chapter 4 Vignette: A Giant of a Man: Simon Ibell (MPS II)
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    Chapter 5 Innovative Funding Models for Rare Diseases
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    Chapter 6 Rare Diseases: The Medical and the Disability Perspectives in the Age of 2.0
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    Chapter 7 Vignette: Taking Control of Thalassemia
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    Chapter 8 Industry Perspectives on Orphan Drug Development
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    Chapter 9 Health 2.0: The Power of the Internet to Raise Awareness of Rare Diseases
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    Chapter 10 Vignette: Living with NOMID: Michael’s Story
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    Chapter 11 Health 2.0 and Information Literacy for Rare and Orphan Diseases
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    Chapter 12 Social Media and Engaging with Health Providers
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    Chapter 13 Vignette: Hope–Overcoming Fabry
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    Chapter 14 Empowering the Rare Disease Community: Thirty Years of Progress
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    Chapter 15 The Role of Social Media in Healthcare: Experiences of a Crohn’s Disease Patient
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    Chapter 16 Vignette: The Blessings and Curse of Diagnosis: Myasthenia Gravis
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    Chapter 17 Noah’s Hope: Family Experiences of Batten Disease
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    Chapter 18 Using Technology to Share Information: Experiences of Oesophagus Atresia (OA) and Tracheaoesophageal Fistel (TOF)
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    Chapter 19 Vignette: MPSIIIA (Sanfilippo)
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    Chapter 20 The Empowered Patient in the Health System of the Future
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    Chapter 21 Vignette: The Journey of a Lifetime
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    Chapter 22 Personalized Medicine: A Cautionary Tale or Instructional Epic
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    Chapter 23 Managing Communication for People with Amyotrophic Lateral Sclerosis: The Role of the Brain-Computer Interface
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    Chapter 24 Vignette: The Wilderness
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    Chapter 25 Opportunities and Challenges for Supporting People with Vascular Dementia Through the Use of Common Web 2.0 Services
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    Chapter 26 Vignette: Recessive Dystrophic Epidermolysis Bullosa (RDEB): Sibling Experiences
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    Chapter 27 Health Policies for Orphan Diseases: International Comparison of Regulatory, Reimbursement and Health Services Policies
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    Chapter 28 Vignette: Route 125 (October 2009)
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    Chapter 29 Rare Diseases Challenges and Opportunities
Attention for Chapter 23: Managing Communication for People with Amyotrophic Lateral Sclerosis: The Role of the Brain-Computer Interface
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Citations

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6 Mendeley
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Chapter title
Managing Communication for People with Amyotrophic Lateral Sclerosis: The Role of the Brain-Computer Interface
Chapter number 23
Book title
Rare Diseases in the Age of Health 2.0
Published by
Springer Berlin Heidelberg, October 2013
DOI 10.1007/978-3-642-38643-5_23
Book ISBNs
978-3-64-238642-8, 978-3-64-238643-5
Authors

Gaye Lightbody, Brendan Allison, Paul McCullagh

Editors

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

Mendeley readers

Mendeley readers

The data shown below were compiled from readership statistics for 6 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
United Kingdom 1 17%
Unknown 5 83%

Demographic breakdown

Readers by professional status Count As %
Student > Ph. D. Student 3 50%
Student > Bachelor 1 17%
Researcher 1 17%
Unknown 1 17%
Readers by discipline Count As %
Computer Science 2 33%
Psychology 1 17%
Medicine and Dentistry 1 17%
Engineering 1 17%
Unknown 1 17%