2019 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 September 18-20, 2019, at the Sheraton San Diego Hotel & Marina in San Diego, California, and is the largest gathering of rare disease patients, advocates and thought leaders worldwide. 

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! 

Online registration will open in March 2019.

Relive every moment from the 2018 Summit and RARE Champions of Hope Celebration.

Watch General Session

Watch Track 1: Living with a Life-Altering Condition

Watch Track 2: Architecting Your Disease Community

Watch Track 3: Patients as Partners and Drivers

Watch Track 4: Science and Technology Innovation

Watch the RARE Champions of Hope Celebration

The Summit features a variety of exhibitors in a collaborative space to help you find rare tools and discover new programs. See the list of 2018 exhibitors here.

We welcomed more than 100 speakers to the 2018 Summit. View the incredible list of rare advocates and experts here.




Thank you to our generous 2018 Summit Sponsors. Your sponsorship helped 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!