Press Releases

Global Genes Appoints New CEO, Kimberly Haugstad

August 6, 2019

Experienced Rare Disease Non-Profit Executive Joins to Lead the Organization During a Period of Unprecedented Growth and Potential for Global Impact

Aliso Viejo, Calif. (August 6, 2019) – On September 1, 2019, Kimberly Haugstad will join Global Genes® as its chief executive officer.  Haugstad brings more than a decade of valuable and highly relevant experience as executive director and then CEO and president of the Hemophilia Federation of America (HFA) – which grew significantly and earned its reputation as a leading patient-centered advocacy, research, education and policy organization in hemophilia under her leadership. 

“We are so excited that Kimberly has chosen to join us,” said Global Genes’ founder Nicole Boice. “She’s led a large rare disease organization through change and growth, in a high-profile condition area with a deeply engaged, diverse community.  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 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 rare disease (hemophilia) parent.

Kimberly Haugstad

“Nicole and the incredible team at Global Genes have built an amazing, caring organization and network of supporters and partners,” said Haugstad.  “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.”  Speaking to her previous experience, Haugstad stated, “I feel blessed to have spent the past 11 years serving HFA. I’ll always be a part of that community. And, in my new role, they’ll continue to be a part of mine as well.”

“We feel incredibly fortunate to have found Kimberly,” said Wendy White, Global Genes’ board chair. “We’ve nearly doubled in size this year, we’ve launched and will be rolling out a number of important initiatives to better serve patient communities globally, and she brings really important leadership, management and organizational expertise to help us as we scale our impact.” 

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. 

“I and the entire board want to thank the Global Genes team for stepping up and going beyond expectations during this transition,” White stated. “Their dedication allowed us to take the time needed to find the best candidate to lead Global Genes into the future.”

About Global Genes®

Global Genes is a 501(c)(3) nonprofit organization that connects, empowers and inspires the rare disease community, with the ultimate goal of eliminating the burdens of rare disease for patients and families everywhere.  We provide hope for the more than 350 million people affected by rare disease around the globe. We fulfill our mission by helping patients find and build communities, gain access to information and resources, connect to researchers, clinicians, industry, government and other stakeholders, share data and experiences, and stand up, stand out and become effective advocates on their own behalf. If you or someone you love have a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit the resource hub at