Henri Termeer

[7] Termeer created a business model,[6] subsequently adopted by many others in the biotech industry, based on charging high prices for therapies for rare genetic disorders affecting children, known as orphan diseases.

As CEO of Genzyme from 1981 to 2011, he developed corporate strategies for growth including optimizing institutional embeddedness,[8] nurturing networks of influential groups and clusters: doctors, private equity, patient-groups, insurance, healthcare umbrella organizations, state and local government, and alumni.

[6] Termeer was named as one of the top fifty "eminent personalities that have advanced rare disease research", in a list produced by Terrapin for the World Orphan Drug Congress.

"[1] At that time Baxter was developing tests for Chagas disease which was very prevalent in Latin America, based on feedback indicating that it would be a big market.

[1] Back in Chicago, he was Baxter's International Marketing Manager for several years with the "Artificial Organs Division—artificial kidneys, dialysis equipment, heart/lung machines, stuff like that.

"[13] Higgins noted in 2004 that at that time, [t]he size and extent of Baxter's influence overall [was] difficult to ascertain since the biotechnology industry, with eight- to ten-year product development cycles, [was] still in its relative infancy.

[15] According to the Boston Globe staff writer Robert Weisman,[16] In the formative years of biotechnology, Genzyme was the industry's Apple, blazing a pathway for creating protein-based treatments for rare diseases.

"In 1983 Termeer became chairman, CEO and president of Genzyme, a then two-year-old start-up biotechnology company, located in Cambridge, Massachusetts.

[10] When Genzyme needed a manufacturing facility, Termeer deliberately chose to remain in Massachusetts and use local contractors instead of using the pharmaceuticals cluster in the New Jersey and Philadelphia areas and their more specialized engineering firms.

"Massachusetts is home to a vibrant biotechnology cluster, which draws on the region's strong universities, medical centers, and venture capital firms.

Porter described Termeer's strategy as a cluster, the new economics of competition with all members benefiting from "a strong base of supporting functions and institutions.

"[18] Under Termeer's leadership, Genzyme built a "critical mass" for its "cluster," in Massachusetts, a group of institutions that achieved unusual competitive success in the life sciences industry or biotechnology.

[19] In 1991 the first version of Genzyme's orphan drug Alglucerase (brand name Ceredase), the only treatment for Gaucher's disease,[20] was approved by the FDA.

[21] Termeer explained in a 2005 interview for The Wall Street Journal that in 1991 one treatment of Cerezyme for one patient took 22,000 placentas annually to manufacture, a difficult and expensive procedure.

The high price of the medication is part of Genzyme's business strategy for the biotech firm to undertake research and development for other drugs and to allow them to fund programs that distribute a small portion of production for free.

In the face of the children's deteriorating health, the family moved to Princeton, New Jersey, to be close to doctors specializing in the disease.

[27] Biotech executive john Crowley, whose two children were diagnosed in 1998 with Pompe's disease, had been a major force behind the search for a cure.

Following the election of President Bill Clinton in 1992, Termeer was concerned about potential health-care and FDA reform and wanted the biotechnology industry to speak with one voice.

[9] In 2012 Termeer became strategic advisor for Prosensa, a venture-backed biotech[9] to provide advice on corporate strategy and to lobby for Protensa, bringing his "experience in building Genzyme into a world leader in rare diseases."

Prosensa's lead compound, an RNA therapy, 051, for an orphan disease known as Duchenne muscular dystrophy (DMD), is being developed by pharmaceutical giant, GlaxoSmithKline (GSK).

"[44] "Prosensa has a technology that could provide an array of RNA therapies for different variants of DMD, which affects about 1 in 3,500 male births and causes muscle wasting that leads to premature death.

[44] When Prosensa was founded in 2002 in Leiden, Netherlands with Hans Schikan as CEO, it was sustained for several years by patient groups—like Charlie's Funds— a non-profit foundation which provided funds for scientific research on DMD.

"The company attracted prominent life science ventures capitalists, including Life Science Partners, Abingworth and New Enterprise Associates (NEA), who led a E23m round last January, bringing David Mott, General Partner of NEA and formerly a key executive with MedImmune to the Supervisory Board.

In 2013 ProQR's CEO Daniel de Boer, whose three-year-old son suffers from cystic fibrosis was introduced to Termeer in Boston by Dutch biotechnology leader Dinko Valerio.

[49] Termeer and Valerio are part of a group of well-connected biotech executives financially backing the Dutch biotech ProQR which was focused on the role of messenger RNA in cystic fibrosis and has now pivoted to inherited retinal diseases including Leber congenital amaurosis, Usher syndrome and retinitis pigmentosa.

"[50] In April 2013 Termeer joined the board of directors of Moderna Therapeutics, a Cambridge-based biotech company that was developing a platform technology for delivery of mRNA.

By December 2012 Moderna Therapeutics received $40 million "financing led by Flagship Ventures and a consortium of private investors.

"[57] Termeer was "connected to 311 board members in 17 different organizations across 20 different industries"[10] including AutoImmune Inc., Diacrin, Inc., rEVO Biologics, Inc., Allergan Inc., Genzyme Corporation, Tekla Life Sciences Investors, AVEO Pharmaceuticals, Partners HealthCare System, Federal Reserve Bank of Boston, Biotechnology Industry Organization, Erasmus University, Capital Royalty, Federal Reserve Bank of Atlanta, Colgate W. Darden Graduate School of Business Administration, Longwood Founders Management, Verastem, Moderna Therapeutics, ProQR Therapeutics, CANbridge Life Sciences and the Fellows of Harvard Medical School Termeer serves on their board of directors.

[10] Termeer was mentoring Lysosomal Therapeutics CEO Dimitri Krainc, who is a neurologist at Massachusetts General Hospital and is originally from Slovenia.

[60] In 2011 Termeer Cathy Minehan, and Chad Gifford— fellow Partners HealthCare Board Members— co-chaired the Massachusetts General Hospital bicentennial.

Memorial in Henri A. Termeer Square in East Cambridge