Early Days
The RARE Foundation, formerly known as the EveryLife Foundation for Rare Diseases, was founded by Dr. Emil Kakkis in 2009.
Kakkis, a renowned geneticist, has dedicated his life to the development of novel drug treatments for rare diseases. These treatments have saved the lives of thousands of children, children like Ryan Dant.
In 1991, doctors told Ryan’s parents that he would not live to see adolescence due to a rare disease called mucopolysaccaridosis 1 (or MPS 1), which had no known treatment.
The Dants were determined to change that. Starting with a bake sale, netting $342, they raised over $3 million to further research for MPS. The funds proved critical to Dr. Kakkis in the development of Aldurazyme.
When a biotech startup took a risk on the new therapy, a clinical trial was approved. In 1998, Ryan became one of the first patients.
The response was dramatic. Ryan regained motion in his joints and the swelling in his liver and spleen subsided. Ryan went on to graduate from the University of Louisville.
college graduation in 2017.
Despite positive results, the FDA required a second trial, adding years and millions of dollars in funding before Aldurazyme was approved in 2003.
In 2009, Dr. Kakkis started the EveryLife Foundation for Rare Diseases to drive legislative and policy change and bring needed treatments to rare disease patients.
In 2017, Mark Dant became chairman of the EveryLife Foundation Board. While no longer a member of the Board, Mark continues to support the organization’s critical mission to this day.
Learn More About Our History
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