Uncommon Challenges; Shared Journeys: Stories of Love, Hope, and Community by Rare Disease Caregivers

Wendy White,Catherine Calhoun,Janis Marie,Jordana Holovach,Julie Loeffler,Laura Buchanan,Matt and Lori Sames,Terri Granard,Bill and Nicole Morris,Dominique Friend,Dayna Fladhammer,Joan Bellontine,Pat Furlong

ISBN 10: 0615445551 / ISBN 13: 9780615445557

Published by Siren Press, 2011

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Synopsis:

This is a book about everyday heroes. Each moment of their lives, caregivers of children with rare disorders are waging a battle to give their children life, health and hope for the future. They're looking for answers, raising money for research, running interference with healthcare institutions, nurturing their children and hoping against hope for a cure. In this collection of inspiring and sometimes heartbreaking stories, you'll discover what it's like to take this journey. All profits from this book will be donated to the charities selected by each of its authors.

Review: This book strikes straight to the heart of the matter - it's all about the patients and their families. I recommend this book to anyone who wants to understand the power that's driving the orphan drug movement. --Dr. Timothy Cote, Director, Office of Orphan Products Development, U.S. Food and Drug Administration

In particular, I recommend this book to biotechnology and pharmaceutical industry leaders and anyone developing and bringing to market these rare disease therapies that are so desperately needed and impatiently received. --Dr. Catherine Sohn, President, Sohn Health Strategies (Formerly Senior VP GlaxoSmithKline)

These stories are case histories that should be shared with our medical and allied healthcare professionals, and with residents and medical students, to increase awareness of rare diseases and help shorten the diagnostic journey for the families yet to receive their answers. --Jayne Gershkowitz, Senior Director, Patient Advocacy & Public Policy, Amicus Therapeutics

Bibliographic Details

Title: Uncommon Challenges; Shared Journeys: ...
Publisher: Siren Press
Publication Date: 2011
Binding: paperback
Condition: Very Good