BIO Honors Dr. Emil D. Kakkis with 2019 Henri A. Termeer Biotechnology Visionary Award

BIO Honors Dr. Emil D. Kakkis with 2019 Henri A. Termeer Biotechnology Visionary Award

May 29, 2019
Media Contact
Theresa Brady

Washington DC., May 29, 2019 – The Biotechnology Innovation Organization (BIO) is pleased to announce the winner of this year’s Henri A. Termeer Biotechnology Visionary Award: Emil D. Kakkis, MD, PhD, President and Chief Executive Officer, Ultragenyx (NASDAQ: RARE) and Founder, EveryLife Foundation for Rare Diseases.

The award, which will be presented to Dr. Kakkis on June 5 during the BIO 2019 International Convention keynote session, recognizes Dr. Kakkis’ transformative work to accelerate research and development of novel treatments for rare diseases.

The Henri A. Termeer Biotechnology Visionary Award was established in 2018 in memory of the late Genzyme CEO. Mr. Termeer’s contributions to the biotechnology industry were powerful and extensive, from the creation of Genzyme to his leadership in the orphan rare disease community. His impact originates from more than his business strategy; it was born of his perseverance, generosity, intellect and deep commitment to heal the world.  The award is designed to recognize one individual annually who reflects Mr. Termeer’s contributions and indelible legacy.

“Dr. Kakkis’ innovative work has pushed the boundaries of our knowledge in rare diseases and through his efforts our industry better prioritizes treatments for rare and ultra-rare diseases and understands the unique needs of clinical trials in this category,” said Jim Greenwood, President and CEO of BIO. “His contributions to the study of rare diseases have been monumental for patients and families, and we’re looking forward to presenting him with this well-deserved honor at BIO 2019.”

Over the last 25 years, Dr. Kakkis has spearheaded the development of several treatments, including an enzyme replacement therapy for the rare and debilitating disorder, mucopolysaccharidosis type I (MPS I), which was approved by the FDA in 2003. Dr. Kakkis has also guided the development and approval of two other treatments for rare disorders affecting infants and children with MPS VI and PKU and has contributed to several other treatment programs.

In 2010, Dr. Kakkis founded Ultragenyx, a biopharmaceutical company focused on the commercialization of novel products for the treatment of rare and ultra-rare genetic diseases. He and his team have advanced clinical stage treatments for seven rare and ultra-rare diseases and have received approvals for two products for rare diseases, treating x-linked hypophosphatemia (XLH) and mucopolysaccharidosis VII (MPS VII).

Dr. Kakkis founded and launched the EveryLife Foundation for Rare Diseases, a non-profit foundation dedicated to accelerating biotech innovation for rare disease treatments through science-driven public policy. The organization successfully advocated for an accelerated approval pathway for rare disease treatments that was passed by Congress in 2012.


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