Rare Diseases in the Age of Health 2.0

Publisher Springer

Format

eBook

2nd Edition 1st Edition

Quantity

Add New

Publisher

Springer

Volume

Copyright

2014

ISBN13

9783642386435

Release

Format

eBook

Grade Level

College Freshman - College Senior

DDC
TBD

Overview

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.\xa0The 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.
Front Cover.
Other Frontmatter: Part I.
Other Frontmatter: Part II.
Title Page.
Copyright Page.
Other Frontmatter: Part III.
Dedication Page.
Preface.
Acknowledgments.
About the Editors.
About the Authors.
Contents.
1: Rare and Orphan Diseases.
2: Why R&D Into Rare Diseases Matter.
3: Vignette: Autoimmune Polyendocrine Syndrome Type I (APS 1).
4: Rare Diseases: How Genomics has Transformed Thinking, Diagnoses and Hope for Affected Families.
5: Vignette: A Giant of a Man: Simon Ibell (MPS II).
6: Innovative Funding Models for Rare Diseases.
7: Rare Diseases: The Medical and the Disability Perspectives in the Age of 2.0.
8: Vignette: Taking Control of Thalassemia.
9: Industry Perspectives on Orphan Drug Development.
10: Health 2.0.
11: Health 2.0: The Power of the Internet to Raise Awareness of Rare Diseases.
12: Vignette: Living with Nomid: Michael’s Story.
13: Health 2.0 and Information Literacy for Rare and Orphan Diseases.
14: Social Media and Engaging with Health Providers.
15: Vignette: Hope–Overcoming Fabry.
16: Empowering the Rare Disease Community: Thirty Years of Progress.
17: Patient Perspectives and Empowerment Issues.
18: The Role of Social Media in Healthcare: Experiences of a Crohn’s Disease Patient.
19: Vignette: The Blessings and Curse of Diagnosis: Myasthenia Gravis.
20: Noah’s Hope: Family Experiences of Batten Disease.
21: Using Technology to Share Information: Experiences of Oesophagus Atresia (OA) and Tracheaoesophageal Fistel (TOF).
22: Vignette: MPSIIIA (Sanfilippo).
23: The Empowered Patient in the Health System of the Future.
24: Vignette: The Journey of a Lifetime.
25: Personalized Medicine: A Cautionary Tale or Instructional Epic.
26: Closing Gaps: Promising Research and Future Considerations.
27: Managing Communication for People with Amyotrophic Lateral Sclerosis: The Role of the Brain-Computer Interface.
28: Vignette: The Wilderness.
29: Opportunities and Challenges for Supporting People with Vascular D
Read More Read Less

Rare Diseases in the Age of Health 2.0

Product Details

Overview

Table of Contents