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Rare Diseases : Challenges and Opportunities for Social Entrepreneurs.

By: Sireau, Nicolas.
Material type: TextTextSeries: eBooks on Demand.Publisher: Saltaire : Routledge, 2013Copyright date: ©2013Edition: 1st ed.Description: 1 online resource (279 pages).Content type: text Media type: computer Carrier type: online resourceISBN: 9781909493209.Subject(s): Rare diseases -- Drug therapy -- Europe.;Entrepreneurship -- Organization & administration -- Europe.;Orphan Drug Production -- Methods -- EuropeGenre/Form: Electronic books.Additional physical formats: Print version:: Rare Diseases : Challenges and Opportunities for Social EntrepreneursDDC classification: 616 Online resources: Click here to view this ebook.
Contents:
Cover -- Half Title -- Title -- Copyright -- Contents -- Introduction -- 1 Toward a focused, multinational, rare disease awareness initiative -- 2 The challenges of scaling up an orphan drug enterprise -- 3 Building an entrepreneurial patient movement: A global case study from the AKU Society -- 4 The practicalities of clinical development of drugs for rare diseases -- 5 Navigating orphan drugs through the regulatory maze: Successes, failures and lessons learned -- 6 Drug repositioning strategies for rare and orphan diseases: A cost-effective approach for new uses for existing drugs -- 7 Why patient registries are crucial for finding cures for rare diseases -- 8 Challenges, strategies and lessons learned for the setting up and running of a European Reference Network for rare disease -- 9 Managing research advances into a rare disease: Case study of the Myrovlytis Trust -- 10 The BLACKSWAN Foundation for rare diseases -- 11 The rise and fall of Sanfilippo syndrome -- 12 Lobbying for a national rare disease plan in the UK: Lessons for rare disease patient alliances -- 13 The global drug development process: What are the implications for rare diseases and where must we go? -- Conclusion -- Index.
Summary: An essential toolkit for social and business entrepreneurs interested in the world of rare diseases, this book presents the latest developments in the field from a global group of experts. An original and timely book, it will help to add knowledge and awareness to a vastly under-published subject.
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Item type Current location Call number URL Status Date due Barcode
Electronic Book UT Tyler Online
Online
HB615 -- .R37 2013 (Browse shelf) http://ebookcentral.proquest.com/lib/uttyler/detail.action?docID=1741715 Available EBC1741715

Cover -- Half Title -- Title -- Copyright -- Contents -- Introduction -- 1 Toward a focused, multinational, rare disease awareness initiative -- 2 The challenges of scaling up an orphan drug enterprise -- 3 Building an entrepreneurial patient movement: A global case study from the AKU Society -- 4 The practicalities of clinical development of drugs for rare diseases -- 5 Navigating orphan drugs through the regulatory maze: Successes, failures and lessons learned -- 6 Drug repositioning strategies for rare and orphan diseases: A cost-effective approach for new uses for existing drugs -- 7 Why patient registries are crucial for finding cures for rare diseases -- 8 Challenges, strategies and lessons learned for the setting up and running of a European Reference Network for rare disease -- 9 Managing research advances into a rare disease: Case study of the Myrovlytis Trust -- 10 The BLACKSWAN Foundation for rare diseases -- 11 The rise and fall of Sanfilippo syndrome -- 12 Lobbying for a national rare disease plan in the UK: Lessons for rare disease patient alliances -- 13 The global drug development process: What are the implications for rare diseases and where must we go? -- Conclusion -- Index.

An essential toolkit for social and business entrepreneurs interested in the world of rare diseases, this book presents the latest developments in the field from a global group of experts. An original and timely book, it will help to add knowledge and awareness to a vastly under-published subject.

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Author notes provided by Syndetics

<p> NICOLAS SIREAU, former Chairman of SolarAid, is Chairman of the AKU Society, which works to find a cure for AKU. He is Chairman of Findacure which funds research into rare diseases. </p>

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