Committee Composition

Dr. Kakkis is currently Ultragenyx’s President and Chief Executive Officer. He is also President of the non-profit EveryLife Foundation for Rare Diseases, an organization he founded in 2009 to work on regulatory policy issues.  Over the last 22 years Dr. Kakkis is best known for his work developing novel treatments for rare disorders. He began his work developing an enzyme replacement therapy (Aldurazyme®) for the rare disorder MPS I, with minimal funding and support. The struggle to get the therapy translated from a successful canine model to patients succeeded due to the critical financial support of the Ryan Foundation, a patient organization formed by Mark and Jeanne Dant for their son Ryan. Aldurazyme development was later supported by BioMarin and Genzyme leading to FDA approval in 2003. After joining BioMarin in 1998, Dr. Kakkis guided the development and approval of two more treatments for rare disorders, MPS VI and PKU, and has contributed to the initiation of 7 other treatment programs for rare disorders, three of which are now in clinical development or approved.

After 11 years at BioMarin, Dr. Kakkis funded and launched the EveryLife Foundation for Rare Diseases, a non-profit foundation dedicated to the acceleration of biotech innovation for rare diseases through practical and scientifically sound improvements to development strategies, regulatory policy and law. The Foundation successfully advocated for improvements to the accelerated approval pathway for rare disease treatments that was passed by Congress in FDASIA in 2012.

Dr. Kakkis went on to found Ultragenyx in 2010 to focus on developing as many rare and ultra-rare disease therapeutics as possible. Since its founding, Ultragenyx has grown to more than 100 employees developing treatments for five rare and ultra-rare diseases in Phase 2 and Phase 3 clinical development.   The company went public in January 2014 (RARE  NASDAQ).

Dr. Kakkis is board certified in both Pediatrics and Medical Genetics. He graduated from Pomona College, magna cum laude and received the Vaile prize for his research.  He received combined M.D. and Ph.D. degrees from the UCLA Medical Scientist Program and received the Bogen prize for his research. He completed a Pediatrics residency and Medical Genetics Training Fellowship at Harbor- UCLA Medical Center from 1989-1993 and from 1993 to 1998, was an assistant professor of Pediatrics at Harbor-UCLA Medical Center where he initiated the enzyme therapy program for MPS I. 

Dr. Ekman joined Ultragenyx as a Board member in March of 2016.  Dr. Ekman has more than 30 years of experience in senior executive, scientific, and clinical functions. He is currently an executive partner at Sofinnova Ventures. Dr. Ekman previously served as president of research and development at Elan. He is credited with advancing the company’s pipeline during this period, and under his leadership, Elan received approval for four U.S. New Drug Applications, three European Marketing Authorization Applications and five Investigational New Drug Applications. Prior to joining Elan, Dr. Ekman led research and development at Schwarz Pharma AG, and prior to that, held a variety of senior scientific and clinical roles at Pharmacia (now Pfizer). Dr. Ekman serves as Chairman of Amarin Corporation plc, Sophiris Bio, Inc., and Prothena Corporation plc, and is a director of Spark Therapeutics, Inc. Dr. Ekman is a board-certified surgeon with a Ph.D. in Experimental Biology and has held several clinical and academic positions in both the United States and Europe. He obtained his Ph.D. and M.D. from the University of Gothenburg, Sweden.

Mr. Welch is currently an Executive Partner at Sofinnova Ventures. Prior to Sofinnova, Mr. Welch served as Chairman, Chief Executive Officer and President of InterMune from May 2008 to October 2014 and served as President and Chief Executive Officer of the Company and a member of the Board from September 2003 to May 2008. From August 2002 to January 2003, Mr. Welch served as Chairman and Chief Executive Officer of Triangle Pharmaceuticals, Inc. From October 2000 to June 2002, Mr. Welch served as president of the pharmaceutical division of Elan Corporation, PLC. Mr. Welch currently serves on the boards of directors of Seattle Genetics and Hyperion Therapeutics. Mr. Welch holds a B.S. from the University of Miami and an M.B.A. from the University of North Carolina.

Mr. Aliski joined Ultragenyx as a Board member in January of 2011.  He is an experienced orphan disease and biotech executive, having worked on the commercialization of a number of orphan products in the US as well as international markets.  His commercial experience includes Chief Commercial Officer for Foldrx, an early stage company  purchased by Pfizer,  General Manager for Biomarin Europe and executive level positions at TKT 5S/Shire and Genzyme Corp.  In addition he has developed pricing and reimbursement models and patient support programs for a number of enzyme replacement therapies including Ceredase/Cerezyme for Gaucher Disease and Replagal for Fabry Disease.   Mr Aliski is currently a commercial consultant for early stage orphan disease companies and also serves on the board of Edimer Pharmaceuticals.

He earned an undergraduate degree in economics from Boston College and a MPA from the Kennedy School of Government at Harvard University.

Dr. Siegall joined Ultragenyx as a board member in January 2014. Dr. Siegall currently serves as President and Chief Executive Officer and Chairman of the Board of Seattle Genetics, Inc. Dr. Siegall co-founded Seattle Genetics in 1998. Prior to Seattle Genetics, Dr. Siegall worked for the Bristol-Myers Squibb Pharmaceutical Research Institute from 1991 to 1997 and the National Cancer Institute, National Institutes of Health from 1988 to 1991. Dr. Siegall serves on the Boards of Directors of Alder BioPharmaceuticals and Mirna Therapeutics, two private biotechnology companies.  Dr. Siegall received a B.S. in Zoology from the University of Maryland and a Ph.D. in Genetics from George Washington University.

Mr. Fust joined Ultragenyx as a board member in January 2014. Mr. Fust was Executive Vice President and Chief Financial Officer of Onyx Pharmaceuticals, Inc. from January 2009 until its acquisition by Amgen, Inc. From May 2003 to December 2008, Mr. Fust served as Chief Financial Officer of Jazz Pharmaceuticals, Inc. From 2002 to 2003, Mr. Fust served as Chief Financial Officer at Perlegen Sciences. Previously, he was Senior Vice President and Chief Financial Officer at ALZA Corporation, where he was an executive from 1996 until 2002. From 1991 until 1996, Mr. Fust was a manager in the healthcare strategy practice at Andersen Consulting. Mr. Fust serves on the Board of Directors of Sunesis Pharmaceuticals, Inc., MacroGenics, Inc., and Atara Biotherapeutics, Inc. Mr. Fust received his B.A. from the University of Minnesota and an M.B.A. from the Stanford Graduate School of Business.

Mr. Narachi joined Ultragenyx as a board member in February 2015. Mr. Narachi currently serves as President and Chief Executive Officer and a director of Orexigen Therapeutics, Inc., a position he has held since March 2009. Previously, Mr. Narachi served as Chairman, Chief Executive Officer and President of Ren Pharmaceuticals, Inc., a private biotechnology company, from November 2006 to March 2009. From August 2002 to January 2008, Mr. Narachi served as chairman of the board of directors of Naryx Pharma, Inc., a private pharmaceutical company. Mr. Narachi joined Amgen in 1984 and held various senior positions throughout the organization over a 20 year career including: Vice President of Development and Representative Director for Amgen Japan; Head of Corporate Strategic Planning; Chief Operations Officer of Amgen BioPharma; and Vice President, Licensing and Business Development.  He served as General Manager of Amgen's Anemia Business from 1999 to 2003 until his retirement in 2004 as an officer and Vice President of Amgen, Inc. He currently serves as the chairman of the board of directors of Celladon Corporation, a publicly traded biotechnology company. Mr. Narachi received a B.S. in Biology and an M.A. degree in Biology and Genetics from the University of California at Davis. He received an M.B.A. from the Anderson Graduate School of Management at University of California, Los Angeles.

  Audit Nominating and Corporate Governance Compensation Research and Development
Emil D. Kakkis M.D., Ph.D.
Emil D. Kakkis M.D., Ph.D.
Director
Chief Executive Officer, Ultragenyx Pharmaceutical Inc.

Dr. Kakkis is currently Ultragenyx’s President and Chief Executive Officer. He is also President of the non-profit EveryLife Foundation for Rare Diseases, an organization he founded in 2009 to work on regulatory policy issues.  Over the last 22 years Dr. Kakkis is best known for his work developing novel treatments for rare disorders. He began his work developing an enzyme replacement therapy (Aldurazyme®) for the rare disorder MPS I, with minimal funding and support. The struggle to get the therapy translated from a successful canine model to patients succeeded due to the critical financial support of the Ryan Foundation, a patient organization formed by Mark and Jeanne Dant for their son Ryan. Aldurazyme development was later supported by BioMarin and Genzyme leading to FDA approval in 2003. After joining BioMarin in 1998, Dr. Kakkis guided the development and approval of two more treatments for rare disorders, MPS VI and PKU, and has contributed to the initiation of 7 other treatment programs for rare disorders, three of which are now in clinical development or approved.

After 11 years at BioMarin, Dr. Kakkis funded and launched the EveryLife Foundation for Rare Diseases, a non-profit foundation dedicated to the acceleration of biotech innovation for rare diseases through practical and scientifically sound improvements to development strategies, regulatory policy and law. The Foundation successfully advocated for improvements to the accelerated approval pathway for rare disease treatments that was passed by Congress in FDASIA in 2012.

Dr. Kakkis went on to found Ultragenyx in 2010 to focus on developing as many rare and ultra-rare disease therapeutics as possible. Since its founding, Ultragenyx has grown to more than 100 employees developing treatments for five rare and ultra-rare diseases in Phase 2 and Phase 3 clinical development.   The company went public in January 2014 (RARE  NASDAQ).

Dr. Kakkis is board certified in both Pediatrics and Medical Genetics. He graduated from Pomona College, magna cum laude and received the Vaile prize for his research.  He received combined M.D. and Ph.D. degrees from the UCLA Medical Scientist Program and received the Bogen prize for his research. He completed a Pediatrics residency and Medical Genetics Training Fellowship at Harbor- UCLA Medical Center from 1989-1993 and from 1993 to 1998, was an assistant professor of Pediatrics at Harbor-UCLA Medical Center where he initiated the enzyme therapy program for MPS I. 

     
Lars Ekman M.D., Ph.D
Lars Ekman M.D., Ph.D
Director
Executive Partner, Sofinnova Ventures

Dr. Ekman joined Ultragenyx as a Board member in March of 2016.  Dr. Ekman has more than 30 years of experience in senior executive, scientific, and clinical functions. He is currently an executive partner at Sofinnova Ventures. Dr. Ekman previously served as president of research and development at Elan. He is credited with advancing the company’s pipeline during this period, and under his leadership, Elan received approval for four U.S. New Drug Applications, three European Marketing Authorization Applications and five Investigational New Drug Applications. Prior to joining Elan, Dr. Ekman led research and development at Schwarz Pharma AG, and prior to that, held a variety of senior scientific and clinical roles at Pharmacia (now Pfizer). Dr. Ekman serves as Chairman of Amarin Corporation plc, Sophiris Bio, Inc., and Prothena Corporation plc, and is a director of Spark Therapeutics, Inc. Dr. Ekman is a board-certified surgeon with a Ph.D. in Experimental Biology and has held several clinical and academic positions in both the United States and Europe. He obtained his Ph.D. and M.D. from the University of Gothenburg, Sweden.

     
Deborah Dunsire, M.D.
Deborah Dunsire, M.D.
President and Chief Executive Officer, Xtuit, Inc.
     
Daniel G. Welch
Daniel G. Welch
Chairman
Executive Partner, Sofinnova Ventures

Mr. Welch is currently an Executive Partner at Sofinnova Ventures. Prior to Sofinnova, Mr. Welch served as Chairman, Chief Executive Officer and President of InterMune from May 2008 to October 2014 and served as President and Chief Executive Officer of the Company and a member of the Board from September 2003 to May 2008. From August 2002 to January 2003, Mr. Welch served as Chairman and Chief Executive Officer of Triangle Pharmaceuticals, Inc. From October 2000 to June 2002, Mr. Welch served as president of the pharmaceutical division of Elan Corporation, PLC. Mr. Welch currently serves on the boards of directors of Seattle Genetics and Hyperion Therapeutics. Mr. Welch holds a B.S. from the University of Miami and an M.B.A. from the University of North Carolina.

   
William Aliski
William Aliski
Director
Biotechnology Executive

Mr. Aliski joined Ultragenyx as a Board member in January of 2011.  He is an experienced orphan disease and biotech executive, having worked on the commercialization of a number of orphan products in the US as well as international markets.  His commercial experience includes Chief Commercial Officer for Foldrx, an early stage company  purchased by Pfizer,  General Manager for Biomarin Europe and executive level positions at TKT 5S/Shire and Genzyme Corp.  In addition he has developed pricing and reimbursement models and patient support programs for a number of enzyme replacement therapies including Ceredase/Cerezyme for Gaucher Disease and Replagal for Fabry Disease.   Mr Aliski is currently a commercial consultant for early stage orphan disease companies and also serves on the board of Edimer Pharmaceuticals.

He earned an undergraduate degree in economics from Boston College and a MPA from the Kennedy School of Government at Harvard University.

   
Clay B. Siegall, Ph.D.
Clay B. Siegall, Ph.D.
Director
Chairman and Chief Executive Officer, Seattle Genetics, Inc.

Dr. Siegall joined Ultragenyx as a board member in January 2014. Dr. Siegall currently serves as President and Chief Executive Officer and Chairman of the Board of Seattle Genetics, Inc. Dr. Siegall co-founded Seattle Genetics in 1998. Prior to Seattle Genetics, Dr. Siegall worked for the Bristol-Myers Squibb Pharmaceutical Research Institute from 1991 to 1997 and the National Cancer Institute, National Institutes of Health from 1988 to 1991. Dr. Siegall serves on the Boards of Directors of Alder BioPharmaceuticals and Mirna Therapeutics, two private biotechnology companies.  Dr. Siegall received a B.S. in Zoology from the University of Maryland and a Ph.D. in Genetics from George Washington University.

   
Matthew K. Fust
Matthew K. Fust
Director
Former Executive Vice President and Chief Financial Officer, Onyx Pharmaceuticals, Inc.

Mr. Fust joined Ultragenyx as a board member in January 2014. Mr. Fust was Executive Vice President and Chief Financial Officer of Onyx Pharmaceuticals, Inc. from January 2009 until its acquisition by Amgen, Inc. From May 2003 to December 2008, Mr. Fust served as Chief Financial Officer of Jazz Pharmaceuticals, Inc. From 2002 to 2003, Mr. Fust served as Chief Financial Officer at Perlegen Sciences. Previously, he was Senior Vice President and Chief Financial Officer at ALZA Corporation, where he was an executive from 1996 until 2002. From 1991 until 1996, Mr. Fust was a manager in the healthcare strategy practice at Andersen Consulting. Mr. Fust serves on the Board of Directors of Sunesis Pharmaceuticals, Inc., MacroGenics, Inc., and Atara Biotherapeutics, Inc. Mr. Fust received his B.A. from the University of Minnesota and an M.B.A. from the Stanford Graduate School of Business.

   
Michael Narachi
Michael Narachi
Director
President and Chief Executive Officer, Orexigen Therapeutics, Inc.

Mr. Narachi joined Ultragenyx as a board member in February 2015. Mr. Narachi currently serves as President and Chief Executive Officer and a director of Orexigen Therapeutics, Inc., a position he has held since March 2009. Previously, Mr. Narachi served as Chairman, Chief Executive Officer and President of Ren Pharmaceuticals, Inc., a private biotechnology company, from November 2006 to March 2009. From August 2002 to January 2008, Mr. Narachi served as chairman of the board of directors of Naryx Pharma, Inc., a private pharmaceutical company. Mr. Narachi joined Amgen in 1984 and held various senior positions throughout the organization over a 20 year career including: Vice President of Development and Representative Director for Amgen Japan; Head of Corporate Strategic Planning; Chief Operations Officer of Amgen BioPharma; and Vice President, Licensing and Business Development.  He served as General Manager of Amgen's Anemia Business from 1999 to 2003 until his retirement in 2004 as an officer and Vice President of Amgen, Inc. He currently serves as the chairman of the board of directors of Celladon Corporation, a publicly traded biotechnology company. Mr. Narachi received a B.S. in Biology and an M.A. degree in Biology and Genetics from the University of California at Davis. He received an M.B.A. from the Anderson Graduate School of Management at University of California, Los Angeles.

   
= Chair of the Board = Chair = Member