Aliso Viejo-based Global Genes, a nonprofit that works to connect and educate people suffering from rare diseases, this month appointed Kimberly Haugstad as chief executive.
Haugstad takes over the role from Global Genes’ founder Nicole Boice, who the organization said will now be focusing on global partnerships, special projects and development efforts at the group, whose work involves raising awareness of and finding treatments for some 7,000 rare genetic diseases that affect an estimated 30 million Americans and 350 million people worldwide.
Haugstad comes to Global Genes after more than a decade at the Hemophilia Federation of America, including a stint as its CEO.
“She’s led a large rare disease organization through change and growth, in a high-profile condition area with a deeply engaged, diverse community,” Boice said. “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.”
Haugstad, who has worked as a business consultant, is the mother of a child with hemophilia, a rare disorder in which blood doesn’t clot normally.
Global Genes generated about $3.7 million in 2017, according to Charity Navigator. It has $1.2 million in assets.
6 Million Helped
The foundation said it has educated 6 million people in 100 countries about rare diseases since 2008.
Global Genes offers a product it calls Rare University, which is an online educational resource for patients and supporters. The company website also offers tools and resources in the form of tips and strategies for coping with disability from a rare disease, in addition to online educational courses.
Currently, there are two courses open for enrollment at Rare University; one is taught by Kendall Davis, and the other by Global Genes officials. Davis teaches a course on drug development while the other course focuses on genetic concepts for patients and families.
The company’s website encourages patients to create an account to access the online portal and to share their stories—which become a point of contact for connection in the community. The next event hosted by Global Genes is the Rare Advocacy Summit on Sept. 18. The eighth annual event will be held at the Sheraton San Diego Hotel & Marina.
