Press Releases

Global Genes Partners with the Orphan Disease Center to Host RARE Drug Development Symposium

April 4, 2019

Global Genes® Partners with the Orphan Disease Center in the Perelman School of Medicine at the University of Pennsylvania to Host 4th Annual RARE Drug Development Symposium

Rare Advocates Gather to Advance Development of Rare Disease Drugs and Research

ALISO VIEJO, Calif. (April 4, 2019)Global Genes®, a leading rare disease patient advocacy organization, in partnership with the Orphan Disease Center (ODC) in the Perelman School of Medicine at the University of Pennsylvania, is proud to announce the return of the Annual RARE Drug Development Symposium on Friday, June 7, 2019, from 9 a.m. — 5:30 p.m. at The Philadelphia 201 Hotel in Philadelphia. Now in its fourth year and held in conjunction with Penn’s Million Dollar Bike Ride (MDBR), a cycling event dedicated to raising funds for rare disease research, the annual symposium serves to connect, educate and inspire rare advocates by focusing on their role in the drug development process.

DETAILS: Global Genes invites all rare patients, advocates and stakeholders to engage in an immersive program designed to empower and provide resources. On June 6, 2019, there will be a networking reception and CureAccelerator Live! Rare Disease. On June 7, 2019, participants will engage in interactive sessions that educate patients and explore their role in the rare disease drug development process. Both beginner and advanced tracks will be offered, giving attendees a more tailored experience.

Following the Symposium, 500 cyclists will ride in honor of and alongside rare disease patients during the ODC’s 6th annual Million Dollar Bike Ride on Saturday, June 8, 2019, across the heart of Philadelphia. The MDBR is held annually to raise funds for critical research that is too often devalued and neglected. The MDBR has funded over $8 million in research for 25 plus rare diseases that have yet to see a cure or even a treatment.

Registration for the symposium is open to the public and attendees do not need to be affiliated with the MDBR to register.


View the full 2019 RARE Drug Development Symposium agenda online at

Registration is $50 and includes a full day of educational programming, breakfast, lunch and the networking reception on Thursday evening. To register, please visit:

SPONSORS: Global Genes would like to thank 2019 RARE Drug Development Symposium Gold Sponsor Horizon Pharma. Additional thanks to our 2019 Silver Sponsors Clementia and Mallinckrodt, and our Bronze Sponsors Regeneron, Spark Therapeutics and Ultragenyx.


RARE Drug Development Symposium

Friday, June 7, 2019

9 a.m. — 5:30 p.m.


Philadelphia 201 Hotel

201 North 17th Street

Philadelphia, Pa.


Media, photographers and camera crews are welcome with prior approval. Please contact: Geena Russo, The ACE Agency, (860) 919-6850, [email protected]

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.