Rare Diseases in the Age of Health 2.0 [Paperback]

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.This text focuses on various factors associated with orphan diseases. It explores new avenues which are opened by information technologies and Health 2.0 and also highlights the economic opportunities of orphan disease medicine.Part I: Rare and Orphan Diseases.- Why R&D into Rare Diseases Matter.- Vignette: Autoimmune Polyendocrine Syndrome Type I (APS 1).- Rare Diseases: How Genomics has Transformed Thinking, Diagnoses and Hope for Affected Families.- Vignette: A Giant of a Man: Simon Ibell (MPS II).- Innovative Funding Models for Rare Diseases.- Rare Diseases: The Medical and the Disability Perspectives in the Age of 2.0.- Vignette: Taking Control of Thalassemia.- Industry Perspectives on Orphan Drug Development.- Part II: Health 2.0.- Health 2.0: The Power of the Internet to Raise Awareness of Rare Diseases.- Vignette: Living with NOMID: Michaels Story.- Health 2.0 and Information Literacy for Rare and Orphan Diseases.- Social Media and Engaging with Health Providers.- Vignette: HopeOvercoming Fabry.- Empowering the Rare Disease Community: Thirty Years of Pló£