Rare Disease Report

Late Genzyme CEO To Be Honored on Rare Disease Day

FEBRUARY 26, 2018
Kaitlynn Ely
On Rare Disease Day, a tribute committee will rename a plaza in Cambridge, Massachusetts in honor of Henri A. Termeer, late biotechnology pioneer and former Genzyme Chief Executive Officer.

The rare disease icon was known for his forward-thinking, intuition, community-mindedness and unwavering determination and commitment to patients with uncommon conditions across the globe.

John Maraganore, CEO of Alnylam Pharmaceuticals, and Robert Coughlin, President and CEO of MassBio, are leading the Henri A. Termeer Tribute Committee by renaming the plaza bordered by Linskey Way, East Kendall, Athaneum and West Kendall at the now Sanofi campus. In 2019, a life-size sculpture of Termeer will be made by the famous sculptor Pablo Eduardo and placed in front of the Sanofi Genzyme building.

The committee and Termeer’s family hope to honor Termeer’s legacy of leadership, patient and community impact, and entrepreneurial mentorship through these gestures.

“[Termeer] was arguably the most impactful leader in the history of the biopharmaceutical industry, who harnessed cutting edge science and innovation to better the lives of patients afflicted with rare genetic diseases,” said John Maraganore, CEO of Alnylam Pharmaceuticals and Termeer Tribute Co-Chair in a press release. “He was a forward-looking thinker whose principles, intuition, community-mindedness, and unwavering commitment to patients transformed the biotech industry.”

Born in the Netherlands, Termeer studied economics at Erasmus University, and in 1973, received his MBA from the University of Virginia and began working at Baxter International. 

In 1983, Termeer was asked to join the visionary start-up Genzyme in Massachusetts. Under his lead, the company grew from a 12-person team into an international corporation with more than 12,000 employees serving patients in over 90 countries.

Revolutionary therapies for Gaucher disease, Pompe disease, Fabry disease, and other conditions were developed and made available for patients worldwide during Termeer’s tenure. He served the rare disease community for 28 years before retiring in 2011 when Genzyme merged with the biotechnology company Sanofi.

In May 2017, Termeer collapsed in his home and unexpectedly passed away at the age of 71, leaving behind his legacy of entrepreneurial culture and sustainable rare disease business.

The renaming ceremony will take place in Kendall Square on Rare Disease Day –  which also would have been to be Termeer’s 72nd birthday. It will observe and commemorate his impressive legacy and the contributions he made to both the rare disease patient community and the thriving biotech industry he assisted in creating.

“Henri forged the path for building a sustainable rare disease business, creating a template for patient impact, new company formation, and social responsibility in a field previously ignored as too small to matter,” said Robert Coughlin, President and CEO of MassBio and Termeer Tribute Co-Chair. “The goals of the Termeer Tribute Committee are to honor his many incredible contributions to the industry by developing and supporting initiatives focused on community and mentorship, and we’re very pleased to launch this effort with the renaming of Kendall Square’s North Plaza as the ‘Henri A. Termeer Square’.”

By February 28, 2018, Maraganore and Coughlin hope to reach the halfway point of their $1,000,000 goal in received donations for the installation and upkeep of the sculpture that will be placed in Termeer Square. Donations will also contribute to future endeavors that will honor Termeer’s work in the rare disease industry.

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