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Rare diseases : challenges and opportunities for social entrepreneurs
Rare diseases (Greenleaf Publishing)
- Available as
- Physical
- Summary
-
This book presents some of the latest developments in the world of rare disease entrepreneurship from a global group of experts. It examines the topic from the business angle, considering the drug ...
This book presents some of the latest developments in the world of rare disease entrepreneurship from a global group of experts. It examines the topic from the business angle, considering the drug development process and providing case studies of successful orphan drug enterprises. It also looks at rare diseases from the perspective of the patient, analyzing the growing rare disease patient movement, a successful patient group that uses social enterprise techniques, and chapters on key requirements for helping patients with rare diseases through registries and centres of excellence.
Details
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- Creator
- edited by Nicolas Sireau
- Format
- Books
- Language
- English
- Contributors
- Publication
-
- Sheffield, UK : Greenleaf Publishing, [2013]
- Physical Details
-
- vi, 272 pages : illustrations
- ISBNs
- 9781906093525, 1906093520, 9781909493209
- OCLC
- ocn827952034
- Includes bibliographical references and index.
- Toward a focused, multinational, rare disease awareness initiative / Peter Saltonstall and E. Michael D. Scott -- The challenges of scaling up an orphan drug enterprise / Hans Schikan -- Building an entrepreneurial patient movement: a global case study from the AKU Society / Oliver Timmis -- The practicalities of clinical development of drugs for rare diseases / Anthony K. Hall -- Navigating orphan drugs through the regulatory maze: successes, failures and lessons learned / Remco de Vrueh, Harald Heemstra and Michelle Putzeist -- Drug repositioning strategies for rare and orphan diseases: a cost-effective approach for new uses for existing drugs / Maria P. del Castillo-Frias, Andrew J. Doig and Farid Khan -- Why patient registries are crucial for finding cures for rare diseases / Pat Furlong and Kyle Brown -- Challenges, strategies and lessons learned for the setting up and running of a European Reference Network for rare disease / Samantha Parker and Stephen Lynn -- Managing research advances into a rare disease: case study of the Myrovlytis Trust / John Solly and Galina Shyndriayeva -- The BLACKSWAN Foundation for rare diseases / Olivier Menzel and Silvia Panigone -- The rise and fall of Sanfilippo syndrome / Karen Aiach -- Lobbying for a national rare disease plan in the UK: lessons for rare disease patient alliances / Stephen Nutt -- The global drug development process: what are the implications for rare diseases and where must we go? / Sharon F. Terry with Jayson Swanson
Subjects
- Rare Diseases -- drug therapy -- Europe.
Medical Subject Heading
- Entrepreneurship -- organization & administration -- Europe.
Medical Subject Heading
- Orphan Drug Production -- methods -- Europe.
Medical Subject Heading
- Rare diseases -- Treatment.
- Social entrepreneurship.
- Drug development -- Research.