Emil Kakkis Joins Nonprofit Biotech Odylia Therapeutics Board of Directors

Emil Kakkis, MD, PhD, joins the Board of Directors of Odylia Therapeutics.  Kakkis is the CEO, President and Founder of Ultragenyx Pharmaceutical Inc., which is committed to developing and commercializing treatments for rare and ultra-rare diseases. He brings to Odylia knowledge of the needs and opportunities in developing life-altering therapies for rare diseases. Dr. Kakkis states “Odylia is a unique organization with the potential to truly shift the way therapies are brought to market, ultimately bringing life changing treatments to people living with rare diseases. I’m looking forward to being part of their work.”

Dr. Kakkis is known for developing novel treatments for rare diseases and advancing the cause of rare disease treatment by founding the EveryLife Foundation for Rare Diseases. He received BIO’s Henri Termeer Visionary Leadership award and a Lifetime Achievement Award from the National MPS Society. He began his academic research at Harbor-UCLA developing an enzyme replacement therapy (Aldurazyme®) for the rare disorder MPS I. After joining BioMarin in 1998, Dr. Kakkis guided the development and approval of two more treatments for rare diseases, MPS VI and PKU, and has contributed to the development of approved or development-stage products of four other rare diseases (CLN2, MPS-IVA, PKU, and achondroplasia). Dr. Kakkis founded Ultragenyx in 2010 to develop rare and ultra-rare disease therapeutics.  Ultragenyx has worked on developing treatments for twenty different genetic diseases and has received commercial approvals for its first two products, Crysvita® for XLH and Mepsevii® for MPS VII.

“We are thrilled to have Emil on the Odylia Board,” said Scott Dorfman, Odylia Therapeutics’ CEO. “He brings a wealth of knowledge to our organization and truly shares Odylia’s vision of progress towards treatments for ultra-rare disease.”

About Odylia

Odylia utilizes a unique nonprofit biotech business model to accelerate the development of gene therapies for people with rare inherited diseases, changing the way treatments are brought from the lab to the clinic. Odylia’s vision is to enable genetic therapies to change lives, regardless of prevalence or commercial interest. Odylia focuses on bringing treatments for rare eye diseases from the lab into clinical trials using AAV technology and other gene delivery techniques. Because these diseases are so rare, there is little commercial interest, leaving Odylia Therapeutics to find a way to move these potential therapies into clinical trials to prevent blindness. For more information, visit Odylia.org