-
develop treatments for
ultra rare disorders. He is the
Founder of the
Everylife Foundation for Rare
Disease and Founder, CEO and
President of Ultragenyx...
-
Philadelphia 2016
RareVoice Award:
Federal Advocacy –
Patient Advocate,
EveryLife Foundation & Rare
Disease Legislative Advocates 2017 100
Great Healthcare...
- July 2023. "The
Accelerated Approval Pathway and Rare Diseases" (PDF).
EveryLife Foundation for Rare Diseases.
Archived (PDF) from the
original on 25 February...
-
through his role as
chief medical officer of
BioMarin and as
founder of the
EveryLife Foundation. He
became the
chief executive officer and president, focusing...
- was
established in 1983 by
individuals and
families with rare diseases.
EveryLife Foundation for Rare
Diseases was
founded in 2009 and is a nonprofit, nonpartisan...
- campaign. **Federal
Advocacy by a
Patient Advocate or
Organization -
EveryLife Foundation RareVoice Awards (2023)**
Honoring MDA’s
advocacy leaders Mindy...
-
Foundation for
Angelman Syndrome Therapeutics, Cure VCP, the Jett Foundation,
EveryLife Foundation for Rare Diseases,
United Mitochondrial Disease Foundation...
-
February 15, 2021.
Retrieved August 4, 2020. "Emil Kakkis, MD, PhD" (PDF).
EveryLife Foundation.
Archived (PDF) from the
original on
November 24, 2024. Retrieved...
