Rare diseases : challenges and opportunities for social entrepreneurs
著者
書誌事項
Rare diseases : challenges and opportunities for social entrepreneurs
Greenleaf Pub., c2013
- : pbk
大学図書館所蔵 全4件
  青森
  岩手
  宮城
  秋田
  山形
  福島
  茨城
  栃木
  群馬
  埼玉
  千葉
  東京
  神奈川
  新潟
  富山
  石川
  福井
  山梨
  長野
  岐阜
  静岡
  愛知
  三重
  滋賀
  京都
  大阪
  兵庫
  奈良
  和歌山
  鳥取
  島根
  岡山
  広島
  山口
  徳島
  香川
  愛媛
  高知
  福岡
  佐賀
  長崎
  熊本
  大分
  宮崎
  鹿児島
  沖縄
  韓国
  中国
  タイ
  イギリス
  ドイツ
  スイス
  フランス
  ベルギー
  オランダ
  スウェーデン
  ノルウェー
  アメリカ
注記
Includes bibliographical references and index
内容説明・目次
内容説明
There are 7,000 rare diseases affecting 6%-8% of the global population. That's 3.5 million people in the UK alone. Yet only 200 rare diseases have approved treatments. In recent years, there has been a surge of interest from business and social entrepreneurs in the field of health - including looking at ways to treat rare disease patients better and faster.
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, analysing 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.
The book will be an essential toolkit for social and business entrepreneurs who are interested in the world of rare/orphan diseases. It has the rigour of an academic publication, along with the clarity of a lay publication. An original and timely book, Rare Diseases will help to add knowledge and awareness to a vastly under-published subject.
目次
Introduction Nicolas Sireau 1. Toward a focused, multinational, rare disease awareness initiative Peter Saltonstall and E. Michael D. Scott 2. The challenges of scaling up an orphan drug enterprise Hans Schikan 3. Building an entrepreneurial patient movement: A global case study from the AKU Society Oliver Timmis 4. The practicalities of clinical development of drugs for rare diseases Anthony K Hall 5. Navigating orphan drugs through the regulatory maze: Successes, failures and lessons learned Remco de Vrueh, Harald Heemstra and Michelle Putzeist 6. Drug repositioning strategies for rare and orphan diseases: A cost-effective approach of new uses for existing drugs. Maria P. del Castillo-Frias, Andrew J. Doig and Farid Khan 7. Why patient registries are crucial for finding cures for rare diseases Pat Furlong and Kyle Brown 8. Challenges, strategies and lessons learned for the setting up and running of a European Reference Network for rare disease Samantha Parker and Stephen Lynn 9. Managing research advances into a rare disease: Case study of the Myrovlytis Trust John Solly and Galina Shyndriayeva 10. The BLACKSWAN Foundation for rare diseases Olivier Menzel and Dr Silvia Panigone 11. The rise and fall of Sanfilippo syndrome Karen Aiach 12. Lobbying for a national rare disease plan in the UK: Lessons for rare disease patient alliances Stephen Nutt 13. The global drug development process: What are the implications for rare diseases and where must we go? Sharon F. Terry with Jayson Swanson Conclusion Nicolas Sireau
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