Press Releases

Global Genes® Builds Leadership Team for Next Decade of Growth and Global Impact

February 24, 2020

Global Genes® Builds Leadership Team for Next Decade of Growth and Global Impact 

Focus is on increasing reach and depth of programs and providing the best platform for connections, education, and resources to advance the rare disease community

Aliso Viejo, Calif. Feb. 25, 2020 – Global Genes, a leading international rare disease advocacy organization, announced today its growth plan to deliver on the promise of improving the lives of everyone affected by rare disease. 

Global Genes supports, connects, and empowers rare disease communities by preparing them to be effective in a digital and data-driven era. The organization has recently seen unprecedented growth including notable capacity-building programs such as the Data DIY series, supported by the Chan Zuckerberg Initiative (CZI), the initiation of a collaborative RARE Research Alliance, and the continued expansion of the annual RARE Patient Advocacy Summit to more than 1,500 participants. 

“Looking ahead to the next decade of growth, we will continue to build upon our capacity- building platform providing advocacy, technology, and education with a strong focus on expanding globally,” said Kimberly Haugstad, CEO, Global Genes. “Our goal is to ensure patients with diverse socioeconomic and geographic backgrounds are supported throughout the rare disease community.”

To help lead the organization’s long-term plans for growth and global impact, Global Genes is proud to announce three significant team additions with Susan Brisendine (Sikora) joining as vice president, engagement programs; Christian Rubio as vice president, strategic advancement; and Pam Rattananont as vice president, development and marketing.

“We are so excited that this team of talented leaders has chosen to join us,” said Haugstad. “Their unique combination of experience and passion will help Global Genes have a broader and more sustainable impact for patients around the world. At a time when patient-centered research is increasingly accepted by researchers and expected by regulators, their leadership will help to continue, accelerate, and solidify new models of collaboration throughout the rare disease community.”

“The board is thrilled with Kimberly’s picks for a leadership team,” said Wendy White, chair of the Global Genes board of directors. “Global Genes is privileged to serve the critical needs of the rare disease community, and we take that opportunity and responsibility very seriously. This new leadership team is a reflection of our commitment to help every rare disease patient have a voice and a role in advancing science and their care.”

As part of its growth strategy, Global Genes will fill several additional roles. Interested candidates should visit the Opportunities web page at

The new leadership team and the extended Global Genes staff welcome opportunities to meet others in the rare disease community during Rare Disease Week in Washington, D.C., February 24–28, 2020; at upcoming Global Genes events; or by connecting to individual staff by visiting the Our Team web page at

About Global Genes®

Founded in 2008, 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