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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 5: Innovative Funding Models for Rare Diseases
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Chapter title
Innovative Funding Models for Rare Diseases
Chapter number 5
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_5
Book ISBNs
978-3-64-238642-8, 978-3-64-238643-5

Amanda Lordemann, Krissi Danielsson, Jimmy Cheng-Ho Lin


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

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 2 33%
Researcher 1 17%
Other 1 17%
Unknown 2 33%
Readers by discipline Count As %
Business, Management and Accounting 1 17%
Agricultural and Biological Sciences 1 17%
Economics, Econometrics and Finance 1 17%
Medicine and Dentistry 1 17%
Unknown 2 33%