Press Releases

Global Genes Announces Global Genes LIVE! A RARE Patient Advocacy (un)Summit

August 18, 2020

ALISO VIEJO, Calif. – Global Genes is pleased to announce the Global Genes LIVE! A RARE Patient Advocacy (un)Summit. Global Genes, a leading international rare patient advocacy organization, is holding this virtual event in place of its highly anticipated annual in-person gathering. The Sept. 15–25, 2020 event will include online events, meet-ups, workshops, and performances.

As with past events, members of the rare disease community, stakeholders, and allies will have the opportunity to connect through interactive activities and educational programming. This online opportunity lets the rare community connect, share, and learn, without the risk of travel.

The event will include RARE Together, Watch Together, a three-part series in partnership with The Disorder Channel; a panel focused on young adults impacted by rare disease including Matthew Zachary, founder of Stupid Cancer; and a special performance by Andrew McMahon, founder of the Dear Jack Foundation. There will also be a celebration of hope event hosted by Brandon Farbstein featuring entertainment by Gracie Van Brunt, Cameron James, and Peter Dankelson. The closing keynote on Friday, September 25, 2020 will feature Illumina’s Dr. Ryan Taft with Debra and Delaney from TNT’s “Chasing the Cure,” addressing the “Power of Human Connections and Communities.”

“While we look forward every year to connecting with the rare community in person, we’re excited to have the chance to provide meaningful content and interact in a virtual capacity this year,” said Kimberly Haugstad, CEO, Global Genes. “With more than 400 million people globally affected by rare disease, we welcome the opportunity to help make our community voices heard with this year’s (un)Summit.”

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About Global Genes

Global Genes is a 501(c)(3) nonprofit organization on a mission to connect, empower, and inspire the rare disease community. We provide hope for more than 400 million people affected by rare disease around the globe; educate millions of people in more than one hundred countries about rare disease; equip patients and advocates with tools and resources; and provide hundreds of thousands of dollars in support for patient impact programs. If you or someone you love has a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit the resource hub at