Press Releases

Global Genes® to Host Third Annual RARE in the Square January 7-9, 2019

January 3, 2019

Media Contact:

Geena RussoThe ACE Agency

(860) 919-6850, [email protected]

Aliso Viejo, CALIF. – Global Genes®, a leading rare disease patient advocacy organization, is set to host the third annual RARE in the Square, an event rallying rare disease innovators, investors, and patients, January 7-9, 2019. Conveniently located in San Francisco’s Union Square and coinciding with J.P. Morgan’s annual Healthcare Conference, the return of RARE in the Square presents an unparalleled networking opportunity to connect during the conference week.

Essential to RARE in the Square, Global Genes partnered with Demy Colton and EBD Group to co-present a panel during the 2019 Biotech Showcase, an investor conference to further propel drug development on Tuesday, January 8, 4:30 p.m. – 5:15 p.m. at the Hilton Union Square. The moderated panel entitled “The Shifting Model – How new era, patient-led collaborations are transforming drug discovery and development in rare disease, and beyond,” will examine new era patient-led collaborations in rare disease drug discovery.

Panel Discussions will be moderated by Walt Kowtoniuk, Principal of Third Rock Ventures and will include discussion from Tauhid Ali, VP and Head of Takeda Tak-celerator, Daniel Fischer, Founder and CEO of Tevard Biosciences and Program Director at Massachusetts Institute of Technology, Neil Kumar, CEO and Founder of BridgeBio, and Christine Waggoner, President and Co-Founder of Cure GM1 Foundation.

“The annual JP Morgan Healthcare Conference brings together more than 10,000 industry and investment leaders in the healthcare space,” said Angie Rowe, Interim Executive Director for Global Genes. “RARE in the Square provides an active and visible presence for rare disease during this critical conference. During this time, we’re able to forge connections with innovators in rare disease and it’s so important that the voice of rare patients is represented here.”

Collectively, rare disease affects 30 million Americans and 350 million people worldwide. That equates to 1 out of 10 people affected by rare disease. To stay up to date on RARE in the Square details and to learn more about the Biotech panel, please visit


RARE in the Square

January 7-9, 2019

8:00 a.m. – 5:00 p.m., daily

San Francisco’s Union Square (across from the Westin St. Francis Hotel)

335 Powell St., San Francisco, CA  94102

Global Genes thanks the following RARE in the Square Sponsors and Partners:

Platinum Sponsor: Gilead

Gold Sponsors: Alnylam Pharmaceuticals, Biomarin, Eversana, Genentech, Horizon Pharma, Insmed

Silver Sponsors: Centogene, Cydan, Harmony Biosciences, Muscular Dystrophy Association, Vertex

Bronze Sponsors: Progenics Pharmaceuticals, WAVE Life Sciences

Partners: EBD Group, Demy Colton, California Life Sciences Association (CLSA)

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 350 million people affected by rare disease around the globe. To date, we’ve educated 6 million people in 100 countries about rare disease, equipped 30,000 patients and advocates with tools and resources, and provided $400,000 in support for innovative patient impact programs. This is just the beginning of what we can achieve together. Visit to get involved today.