Kimberly Haugstad

Next month at the Global Genes’ Patient Summit, many in attendance will be able to meet the new CEO of that rare disease patient organization, Kimberly Haugstad.

This year, the conference is in San Diego but those unable to make the trip, can  register (for free) to see many of the presentations online. Presentations that will provide practical tools for a patient group to grow and thrive, whether they are in Canada or the United States.

As a veteran of the Summit, I can attest that it is the most informative, interactive, and inspiring patient conferences currently out there. Recently, I talked to Haugstad about the summit as well as what she hopes to bring to the organization.

“I have been working in the rare disease space already for the last eleven years but in a specific disease category of bleeding disorder,” noted Haugstad, who is the mother of a child with a rare bleeding disorder as well as the president and CEO of a multi-million dollar patient group, the Hemophilia Federation of America.

Her exceptional advocacy work experience is complimented by her earlier education and business experience.

“I have a master’s degree in business and was a corporate consultant for a long time where I had a real passion  for building teams,  organizational design, organizational development, and really scaling things for growth,” stated Haugstad.

The need to reorganize really hit home for Haugstad when her son was born with hemophilia B and the doctor told her that she better have a good insurance because life was going to be expensive. That is when she understood the system needed to change; first at the Hemophilia Federation of America and now as an organizational builder for Global Genes.

Following the Summit, Global Genes will continue their DIY series with the third of four instalments, this time in Philadelphia in October (24th and 25th). That session on Developing Collaborative Research Networks, along with past sessions,  can also be seen online (also for free) by registering at