Press Releases

Global Genes® to Host Fourth Annual RARE in the Square January 13-15, 2020

December 5, 2019

Global Genes® to Host Fourth Annual RARE in the Square

January 13-15, 2020

Coinciding with J.P. Morgan’s annual Healthcare Conference, stakeholders of rare disease join in San Francisco’s Union Square to forge partnerships and advance innovation

Aliso Viejo, CALIF. – December 5, 2019 – Global Genes®, a leading rare disease patient advocacy organization, is proud to announce the return of the fourth annual RARE in the Square, an event rallying rare disease innovators, investors, and patients, January 13-15, 2020. Conveniently located in San Francisco’s Union Square and coinciding with J.P. Morgan’s annual Healthcare Conference, one of the most significant industry events of the year, the return of RARE in the Square presents an unparalleled networking opportunity during the conference week.

In addition to RARE in the Square, Global Genes is excited to again partner with Demy Colton and EBD Group’s 2020 Biotech Showcase on Tuesday, January 14, 4:30 p.m. – 5:15 p.m. at the Hilton Union Square. This forward-looking panel, “Demystifying the Value of AI for Rare Disease Science and Treatment,” examines the next revolution of artificial intelligence and its relationship with rare disease to accelerate patient diagnosis, target discovery, drug discovery, and clinical care.

For the duration of the conference, participants and the public are invited to visit Union Square, network, and meet the featured Biotech Showcase experts including moderator, John Reynders, vice president, Data Sciences, Genomics, and Bioinformatics of Alexion Pharmaceuticals, Carrie Burke, vice president, Business Development and Partnerships at Clinithink, Tim Guilliams, CEO and co-founder of Healx, and Charlotte Hobbs, vice president, Research and Clinical Management for Rady Children’s Institute for Genomic Medicine.

“RARE in the Square represents the voice of rare patients at this critical conference and is a physical representation of the platform Global Genes provides patients, innovators, and stakeholders to share their knowledge and experience, further propelling rare disease research and ultimately improving efforts towards patient care and cures,” said Kimberly Haugstad, CEO, Global Genes. “RARE in the Square plays a seminal role in raising awareness of the need to invest in rare disease treatments and cures. Additionally, based on outcomes of our capacity building and training programs like the RARE Entrepreneur Bootcamp partnership, Data DIY and others, we help our community evolve past de-risking early investment in rare diseases to becoming equal collaborators and direct investment drivers in their disease.”

Collectively, rare disease affects more than 400 million people worldwide. 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 13-15, 2020

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:

Gold Sponsors: Alnylam Pharmaceuticals, BioMarin, Gilead, Horizon Pharma

Silver Sponsors: Cydan, Genentech, Insmed, Ipsen, Retrophin, Vertex

Bronze Sponsors: Alexion Pharmaceuticals

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




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 more than 18 million people in 134 countries about rare disease, equipped 190,000 patients and advocates with tools and resources, and provided $460,000 in support for innovative patient impact programs. 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