Press Releases

Pushing Rare Disease Drug Development Forward Despite COVID-19

May 7, 2020

Global Genes to Host RARE Drug Development Symposium Virtual Event

Aliso Viejo, Calif., May 7, 2020 Global Genes®, a leading rare disease patient advocacy organization, in partnership with the Orphan Disease Center at the Perelman School of Medicine at the University of Pennsylvania, will host this year’s RARE Drug Development Symposium in an online setting to continue support for rare disease drug development during the COVID-19 pandemic.

This interactive event, designed to connect, educate, and inspire rare disease advocates and researchers, features tracks for both beginners and advanced participants for a more tailored and engaging experience. Sessions will focus on the drug development process with roundtable discussions called RARE Rounds as well as the annual CUREAccelerator Live! event, a philanthropic pitch competition from Cures Within Reach that gives participants the chance to vote for the next breakthrough repurposing treatment.

In addition, featured speaker Christopher P. Austin, M.D., director, National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health (NIH), will discuss “Innovations & Collaborations Advancing Translational Research for Rare Diseases.”

“We’ve entered a new landscape,” said Austin. “Despite the new reality we all find ourselves in, we are here to help push needed treatments and cures forward in innovative ways for the rare disease community.”

On behalf of the rare disease community, Global Genes and the Orphan Disease Center are grateful for the continued support of our all sponsors and would like to especially thank Horizon Therapeutics, this year’s Gold Sponsor. All rare disease patients, advocates, researchers and industry stakeholders are invited to participate in this year’s event, happening June 11-12, 2020. Visit the event page to register.

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