Rare Daily Staff

Global Gene’s named Kimberly Haugstad, an experienced rare disease nonprofit leader, as its new CEO effective September 1.

She replaces Global Genes’ founder Nicole Boice, who began to transition out of her role as CEO in July 2018 to focus on scaling up global partnerships, special projects, and development efforts to support continued growth. 

Haugstad brings more than a decade of experience as executive director and then CEO and president of the Hemophilia Federation of America (HFA), which grew to become a leading patient-centered advocacy, research, education, and policy organization under her leadership. 

“She’s led a large rare disease organization through change and growth, in a high-profile condition area with a deeply engaged, diverse community,” said Boice. “She understands the connected influences of science, technology, business and policy on rare communities. And she views it all through the lens of a rare disease caregiver.”  

Prior to her work at HFA, Haugstad built a successful career in business, with particular expertise in organizational development.  Her journey into advocacy leadership was inspired, and continues to be driven, by her experience as a parent of a child with hemophilia.

“This represents a huge opportunity, and responsibility, to have a bigger and broader impact for patients around the world in addressing a wide range of needs,” Haugstad said. 

Haugstad’s appointment is the culmination of a year-long CEO search after Boice began her transition from CEO in July 2018 to focus on scaling up global partnerships, special projects and development efforts to support continued growth. 

Photo: Kimberly Haugstad, newly appointed CEO of Global Genes

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