Rare Disease Companies, Investors, Patient Groups to Convene in Union Square During JP Morgan Healthcare Conference for RARE in the Square

December 13, 2016


Unique venue features rare disease innovation, collaboration, networking


ALISO VIEJO, Calif.December 13, 2016 — Global Genes®, a leading global advocacy organization for rare disease,  today announced RARE in the Square, an event for rare disease innovators, investors and patients January 9-11, 2017, in San Francisco’s Union Square.


RARE in the SQUARE coincides with the annual JP Morgan Healthcare Conference, Biotech Showcase and other high-level biotech-focused meetings, which draw more than 10,000 high-level participants. RARE in the Square will create the opportunity for rare-disease focused companies and organizations to network at the epicenter of all the activities of the week in a unique, one-of-a-kind space in Union Square.


“Rare disease has become an important area of investment in healthcare, with an annual growth rate nearly double the general drug market, some important treatments reaching the market just last year, and even more progress anticipated in 2017,“ said Nicole Boice, CEO and Founder of Global Genes. “We are bringing rare disease companies, investors and patient communities together at RARE in the Square to celebrate advances, and to foster new connections that will be the basis for future innovations for the thousands of other rare diseases in need of treatments.”


The central location of Union Square, a popular gathering place for conference attendees and the public alike, will draw attention to the need for continued focus on advances in rare disease, while facilitating networking and building awareness in a comfortable setting.


Shire, a leading company focused on developing treatments for rare and specialized conditions, is the lead sponsor for the event. “We see Rare in the Square as a bold and visible statement about the importance, and urgency, of rare disease innovation and investment, and Global Genes as a key partner in helping patient communities participate more fully in drug discovery and development,” said Shire Chief Executive Officer Flemming Ornskov, M.D., M.P.H. “This event creates an opportunity for companies, investors, health systems, patient groups and others, like us, interested in innovation for rare disease treatments to connect and build new relationships, while also reminding us of how much work we have yet to do together.”


RARE in the Square Sponsors and Supporters include:


  • Shire
  • Alliance for Regenerative Medicine
  • Abeona Therapeutics
  • Agios Pharmaceuticals
  • Alexion Pharmaceuticals
  • Alnylam Pharmaceuticals
  • California Life Sciences Association
  • Clementia Pharmaceuticals
  • EBD Group
  • Enzyvant Sciences
  • GenePeeks
  • Horizon Pharma
  • Impact Pediatric Health
  • Invitae
  • Ogilvy | Feinstein Kean Healthcare
  • Third Rock Ventures
  • Ultragenyx Pharmaceutical
  • WAVE Life Sciences



Event Details

January 9-11, 2017

8:00 a.m. – 5:00 p.m. daily

Union Square, San Francisco


JP Morgan Healthcare Conference, Biotech Showcase and other event attendees, members of the media and public are invited to learn more about rare diseases, and network with leading rare disease researchers and organizations, as well as patient group leaders.


Fireside Chat

In addition to RARE in the Square, Global Genes has partnered with EBD Group and Demy-Colton, and their annual Biotech Showcase, for a special moderated Fireside Chat entitled, Unmet Needs, Uncommon Commitment: The Shift Toward Investment in Rare Diseases. This session will take place Tuesday, January 10 from 4:45 – 5:45 p.m., at the Hilton San Francisco, Union Square. Joining the discussion will be Henri Termeer, Former Chairman and CEO Genzyme, Debra Miller, CEO CureDuchenne, Philip J. Vickers, Ph.D., Head, Research and Development of Shire, and Alison Silva, CEO Orphan Group, with special remarks from Flemming Ornskov, CEO of Shire. For more information visit


To learn more about RARE in the Square and how to get involved, visit



About Global Genes
Global Genes is a leading global advocacy non-profit organization for patients and families fighting rare and genetic diseases. Global Genes works to eliminate rare and genetic disease challenges by building awareness, developing patient-focused educational tools, funding patient care programs and early investigative research. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes is dedicated to uniting experts, advocates, patients and their families. The organization seeks to support the development of treatments and cures for the 7,000+ rare and genetic diseases that affect an estimated 30 million Americans and over 350 million people worldwide.

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