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EveryLife Found Dr. Emil Kakkis Receives Prestigious Award BIO International Convention

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Friday, June 07, 2019

EveryLife Foundation for Rare Diseases Founder Dr. Emil Kakkis was the recipient of the prestigious Henri A. Termeer Biotechnology Visionary Award at the Biotechnology Innovation Organization's BIO 2019 International Convention in Philadelphia. The award, established in 2018 in memory of the late Genzyme CEO, recognized Dr. Kakkis for his "transformative work to accelerate research and development of novel treatments for rare diseases," according to a statement released by BIO.

"Henri Termeer was a pioneer who worked relentlessly to do what many thought was impossible and bring therapies to patients with rare diseases," said Dr. Kakkis. "I am deeply honored to receive this award from BIO."

Dr. Kakkis has dedicated his life to the development of novel drug treatments for rare diseases that have saved the lives of thousands of children.

"There's nothing else you can do that is more uplifting and compelling than being there in the room and treating a patient for the first time. Developing treatments and getting to that moment has consumed my career," said Dr. Kakkis. "There is that special bond between those who are hoping to get treated and those trying to develop the treatments. Even if it doesn't work, they know that we're there trying to do it and they at least know that someone is trying."

Dr. Kakkis launched the Foundation in 2009 to remove regulatory barriers for rare disease treatments and increase investment in their development. Over the past 10 years, the Foundation has become a national leader in uniting the rare disease community to affect public policy change. In recognition of its 10th anniversary, EveryLife recently released a report and video celebrating its accomplishments and progress made, thanks to Dr. Kakkis' vision and the commitment of rare disease advocates.

"Dr. Kakkis was the first that I ever heard verbalize that the voice of rare disease patients is unheard. He created the EveryLife Foundation to make their voices heard and drive policy change," said EveryLife Board Chair Mark Dant. "Thanks to Dr. Kakkis' vision, rare disease patients realize that they may not have the same disorder, but they all have the same drive and together, they really can move mountains."

Dant's son Ryan was one of the many lives saved by Dr. Kakkis through his development of Aldurazyme, an enzyme replacement therapy.

Dr. Kakkis with Christina Hartman (left), EveryLife's Senior Director of Policy and Advocacy, and Julia Jenkins, EveryLife's Executive Director

About the EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. The Foundation does not speak for patients, but instead provides the training, education, resources and opportunities to make patient voices heard. By activating the patient advocate, the Foundation believes it can change public policy and save lives.

Source: EveryLife Foundation for Rare Diseases
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