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Conscience and Courage: How Visionary CEO Henri Termeer Built a Biotech Giant and Pioneered the Rare Disease Industry

Subject Area(s):  Biology in SocietyGeneral Interest TitlesAutobiography/Biography

By John Hawkins

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Prologue: Patient One
Chapter 10: The Crisis

© 2019 • 222 pages, 32-page photo insert, illustrated (63 B&W), index

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Hardcover •
ISBN  978-1-621823-70-4

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  •     Description    
  •     Contents    


Henri Termeer was one of the first of a pioneering group of business executives who built a disparate group of fledgling companies into a biotech industry that has driven decades of therapeutic innovation. During a 28-year career at Genzyme, including 26 years as CEO, he created a process of drug development that for the first time was patient-centered. He also helped forge biotech's public policy agenda and inspired a generation of entrepreneurs to take on large and important challenges. An extraordinary number of today's biotech leaders were directly mentored by Termeer. His own leadership was iconoclastic: He broke rules and took risks, setting ambitious goals and finding novel ways to reach them. In doing so he transformed an industry and brought hope to patients with a range of diseases previously deemed too rare to justify the investment needed to support the development of specific therapies. In Conscience and Courage, John Hawkins, an insightful analyst of healthcare leaders, reveals the philosophy, principles, methods, and habits of a prominent and successful CEO who defied convention to create an investor-owned global enterprise that put people before profits and improved the lives of thousands of forgotten patients.

Advanced praise:

“Without Henri Termeer, patients with rare diseases would have no hope for new medicines. This authoritative book brings home the highs and the lows of Henri's crusade for rare disease patients and families everywhere. For anyone who really wants to know what ‘patient-centric' means, this one's a must-read.”

—John Maraganore, CEO, Alnylam Pharmaceuticals

“Henri Termeer, through his relentless commitment to patients, created a winning global company and unleashed the era of transformative medicines for rare disease. His astonishing business acumen is only surpassed by his humanity-care for individual patients, his colleagues, his family, and his friends. John Hawkins masterfully captures the incredible business story as well as the amazing essence of the man.”

—Deborah Dunsire, MD, President & CEO, H. Lundbeck A/S

“Henri Termeer led a remarkable life. By pioneering the treatment of rare diseases, he transformed the lives of many forgotten patients and families. John Hawkins' account captures this passion and purpose beautifully.”

—Robbie Huffines, Global Chairman, Investment Banking, JP Morgan & Co.

“Henri Termeer was a pioneer of the biotechnology industry, combining an astute business mind with a deep passion and empathy for patients and their families. He shaped, almost out of whole cloth, a company that would shine a light on the path to better medicines to an historically underrepresented group of patients and, in so doing, built Genzyme into a formidable enterprise. John Hawkins tells this story with insight, wit, and warmth, painting an indelible portrait of a remarkable man.”

—Vicki L. Sato, PhD, Chairman, Denali Therapeutics

“Henri Termeer was among the most talented entrepreneurs I have encountered in my career. His drive, determination, and especially his strategic vision profoundly impacted not only Genzyme, but also the evolution of the biotechnology industry and the development of innovative, new drugs for rare disease patients worldwide. Henri was also a true business statesman in both Boston and the Region who contributed to the prosperity Massachusetts has achieved. John Hawkins’ book captures the richness, depth and complexity of Henri’s life story and his many contributions. His deep research and colorful writing make this a great read.”

—Professor Michael Porter, University Professor, Harvard Business School

“If any leader ever took risks and founded a humanitarian movement, it was Henri Termeer. A thoughtful man driven by what many viewed as an impossible-to-achieve vision, he recruited and encouraged other leaders, many of whom formed new companies, to push on a frontier that he knew was much bigger than he alone could conquer. This is a wonderful, inspirational book which brilliantly describes the high character of an underappreciated, modern-day hero, a man who has improved, and in some cases saved, the lives of millions who will never know his name.”

—Professor Carl J. Schramm, Former President of The Ewing Marion Kauffman Foundation and Seven-times Author, including Burn the Business Plan

“The prospects for children born with genetic diseases today are vastly different than they were before Henri Termeer defied convention to build Genzyme. John Hawkins has brought Henri vividly to life on the pages of this book. This is sure to be an inspirational read for anyone interested in understanding how Termeer took such a courageous path to transform the outlook for rare disease patients, giving hope to millions.”

—James Geraghty, Former Genzyme Executive and Chairman, Orchard Therapeutics


Foreword, by Joshua Boger
Prologue: Patient One
1 The Leader Within
2 Wings
3 A Great Convergence
4 Mission: Impossible
5 Delivering Hope
6 Duty, Honor, Patients
7 Into the Lion’s Den
8 From Brazil to China
9 HAT Tips
10 The Crisis
11 Changing of the Guard
12 The Diaspora
13 A Citizen in Full
14 The Oracle of Marblehead
Epilogue: Forgotten No More
Photo Section