Press Releases

Global Genes and EveryLife Foundation Announce Virtual Rare Disease Leadership Tour

April 27, 2020

ALISO VIEJO, Calif. April 28, 2020Global Genes and the EveryLife Foundation for Rare Diseases, both leading rare patient advocacy organizations, are pleased to announce the fourth annual RARE on the Road, a Rare Disease Leadership Tour. This year, because of COVID-19 travel restrictions, the event will be held virtually on June 23–24, 2020.

On June 23, an interactive webinar will feature experts and up-and-coming leaders in the rare disease advocacy space sharing best practices. The following day, June 24, will feature RARE Chats – state-based breakout sessions offering attendees an opportunity to learn from local rare disease leaders, exchange ideas, learn to more effectively tell their stories, and receive feedback from their peers.

“In making this event virtual, it was important to us to maintain the personal connection of our in-person events. I think we’ve done that especially with our new RARE Chats feature, said Julia Jenkins, executive director of the EveryLife Foundation for Rare Diseases. “Community members will learn from their peers about how to make their unique story heard, and they’ll walk away with new friends in their local area too. Although we’re not able to get together in person right now, it’s so import to maintain contact and keep our momentum going.”

“With more than 400 million people globally affected by rare disease, there’s a tremendous need for coordinated support, education, collaboration, and experience-sharing for patients and advocates,” said Susan Brisendine, vice president, engagement programs at Global Genes. “This is one important way we can reach them to support and serve them virtually.”

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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. To date, we’ve educated millions of people in more than one hundred countries about rare disease, equipped patients and advocates with tools and resources, and provided hundreds of thousands of dollars in support for innovative 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

About EveryLife Foundation for Rare Diseases
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy.