Findacure, a UK registered charity, today announced that it has published a new book entitled “The Patient Group Handbook: A Practical Guide for Research and Drug Development”. The book is now available on Amazon as both Kindle and a print versions. All proceeds go to charity.
With a Foreword by EURORDIS CEO, Yann le Cam, the book is aimed primarily at patient organisations and academia, but could be useful for anyone involved in drug development, particularly those working on orphan drugs for rare diseases.
“When I wanted to find a treatment to help my boys, both of whom have a rare genetic disease called alkaptonuria, or black bone disease, I didn’t know the first thing about drug development. This book would have been invaluable to me then and I hope it will help others who are in my situation now.” said Dr Nick Sireau, Co-Editor and Founder of Findacure.
The book brings together some 50 world experts who together have written 25 chapters, covering topics ranging from setting up and managing a patient group and engaging with industry to finding innovative new funding strategies for rare diseases. It also covers more formal aspects like the orphan drug legislation, adaptive licensing, interaction with regulators, and setting up and running a clinical trial.
“I am delighted that so many top professionals were willing to give their time to help create this handbook. We hope that it will help many organisations to move ahead with developing new treatments for serious rare diseases which otherwise would remain neglected.” said Dr Anthony Hall, lead Editor and Co-founder of Findacure.
Findacure is a UK charity building the rare disease community to drive research and develop treatments. Findacure aims to empower patient groups, so that they can increase their capacity and become effective campaigners for change. The charity runs a series of innovative programmes to communicate with patient group representatives and provide them with the knowledge and skills needed to reach their own goals. Together, these projects allow groups to learn from each other and from other experts, which negates the need for each to ‘reinvent the wheel’. Programmes include a peer mentoring programme, an online portal and training workshops on many of the topics covered by the Handbook.