2018 RARE Patient Advocacy Summit


The RARE Patient Advocacy Summit is the can’t-miss event of the year for rare disease stakeholders. The Summit will take place October 3-4 at the Hotel Irvine in Irvine, California, and is the largest gathering of rare disease patients, advocates and thought leaders worldwide. 

Take advantage of this opportunity to connect and learn from more than 100 experts in rare disease leading educational sessions in four specialized learning tracks:

  • Living with a Life-Altering Condition
  • Architecting Your Disease Community
  • Patients as Partners and Drivers
  • Science and Technology Innovation

The RARE Patient Advocacy Summit offers many unique opportunities to support the rare community by participating in the largest educational event for rare patients and advocates. Join Global Genes, partners and rare disease community members from all walks of life to become equipped with the tools needed to persevere and thrive on our paths forward!



Curious about what to expect? Watch highlights from the 2017 Global Genes RARE Patient Advocacy Summit:


The Summit features more than 30 exhibitors in a collaborative space to help you find rare tools and discover new programs to benefit you. The exhibit hall is open Tuesday, October 2nd from 3-8 pm; Wednesday, October 3rd from 6:30 am-5:30 pm; and Thursday, October 4th from 6:30 am-2 pm. See the exciting list of exhibitors here.

This year we welcome over 50 speakers to the 2018 Summit. Get to know this incredible list of rare advocates and experts here.




We’re so glad you are joining us at the Summit! We’ve put together a helpful list of places to stay, directions, and everything else out-of-towners need to know to plan their trip.

The room blocks at Hotel Irvine and the Residence Inn are full. You may still book outside of the room block through the hotels directly.  Other hotels nearby include Courtyard by Marriott, AC Hotel, and Marriott Irvine Spectrum.

Can’t attend the Summit in person? Don’t worry, you can view the event for free on Livestream!


Become a part of a life-altering experience in the rare disease community! Your sponsorship helps us empower and educate patients, advocates, and rare disease stakeholders to help them drive progress and create positive change.

Thank you to our generous 2018 Summit Sponsors for your support- we are looking forward to our largest and most robust event to date!