Emil Kakkis joins Nonprofit Biotech Odylia Therapeutics Board of Directors

Atlanta, GA August 6, 2019 – Emil Kakkis, MD, PhD, joins the Board of Directors for Odylia Therapeutics.  Kakkis is the CEO, President and Founder of Ultragenyx Pharmaceutical Inc., which is committed to developing and commercializing treatments  for multiple rare and ultra-rare diseases. He brings to Odylia vast 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.”   

Over the last 25 years, Dr. Kakkis is best known for his work developing novel treatments for rare diseases and working to advance the cause of rare disease treatment through advocacy on policy issues by founding and supporting the EveryLife Foundation for Rare Diseases. He received BIO’s Henri Termeer Visionary Leadership award in 2019 for his work 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 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 worked on developing treatments for twenty different genetic diseases and has now 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 an unparalleled wealth of knowledge to our organization and truly shares Odylia’s vision of progress towards treatments for ultra-rare disease.”