Biotech Leader and Rare Disease Champion, Henri Termeer, Passes at Age 71

This last week, the Rare Disease Community lost a true Champion of Hope.  The announcement of Henri Termeer’s passing was met with shock and much sadness.  It will be impossible to fill the void that he will leave behind, because of his steadfast commitment to impacting rare disease patients and their families globally.

“Henri has been an important part of Global Genes and its emergence as an international, rare disease advocacy organization.  His guidance and support had an indelible impact on what we are today, the programs we deliver, and our impact on patients,” says Global Genes CEO, Nicole Boice.  “His laser focus and commitment to patients created an important culture that many Genzyme alumni have taken with them when starting new rare disease companies.  He showed the world that a compassionate company could ultimately deliver results.  His impact on the rare disease field is unmatched, and serves as a reminder that companies can do well by doing good, by keeping priorities straight, and leading with compassion.”

Termeer joined Genzyme in the early 1980’s. He led the company through many biopharmaceutical advancements from 1983 to 2011. His guiding purpose was to help in curing patients with rare diseases.   Even after the company was sold to Sanofi SA, he continued to support the community by donating $10 million to launch the Henri and Belinda Termeer Center for Targeted Therapies at Massachusetts General, where he sat on the hospital’s board of trustees.

“His vision was to cure rare diseases, and he always had time to meet with the people dependent on our treatments,” David Meeker, president of Sanofi Genzyme told the Boston Globe. “He had the ability to forge such an intense relationship with everyone he met, and he made everyone in the industry feel like he cared about them as an individual.”

With his vision in our hearts, Global Genes will continue to do its part in serving and supporting the Rare Disease Community.  We will continue to award the Henri Termeer Lifetime Achievement Award aptly named in his honor, following his acceptance in 2014,  at our annual Tribute to Champions of Hope to continue to recognize the legacies of compassion, impact, and dedication of those rare disease leaders who never lose sight of whom they serve.

“I know the many colleagues who worked directly with Henri loved his enthusiasm and support for rare disease”, said Stephen Groft, Former Director, Office of Rare Diseases Research at the National Center for Advancing Translational Sciences, NIH, the 2015 Henri Termeer Lifetime Achievement Award recipient. “He will be missed by so many of us and we will never forget his commitment to rare disease that he brought to Genzyme and the global Rare Diseases Community. He is and will always be remembered as a true Champion of Hope.”

Henri, from all of us at Global Genes, and from those that you have touched in our incredible community and rare disease family, thank you for your commitment, for staying the course, and for your help in changing the world for rare disease patients.
For details on Henri’s memorial services or to share condolences with his family, please visit this website.