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 200 experts in rare disease leading 100 educational sessions. This year, the Summit offers four specialized learning tracks to help you spark change including:

  • Living with a life-altering condition, before and after diagnosis
  • Becoming a successful architect of your heath and that of your disease community
  • Building on advances as a patient, partner, and driver in drug development
  • Learning about the latest science and technology that drive 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! 

Click here to register now.



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





Each year, dozens of exhibitors in the rare disease space congregate at the Summit to provide patients with information, tools and resources to help them along their journey. If you’d like to register as an exhibitor, click here. Space is limited so be sure to register ASAP.





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. Click here for a comprehensive Summit travel guide:

Can’t attend the Summit in person? Don’t worry, you can view the event on Livestream! Click here to register.


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. Click here to learn how you can sponsor the Summit.

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