Confluence of interests

Patient advocacy group EveryLife Foundation’s funding and focus


Pharmaceutical industry funding does not create an inherent conflict of interest for patient groups, according to Emil Kakkis, president of the EveryLife Foundation for Rare Diseases.

Kakkis, also president and CEO of rare and ultra-rare disease company Ultragenyx Pharmaceutical Inc., founded EveryLife in 2009 and continues to lead the foundation.

Kakkis told BioCentury he and his family have been the “major” source of funds for EveryLife. In addition to the Kakkis family, more than half of

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