Press Releases

Global Genes to Host World’s Largest Gathering of Rare Disease Stakeholders in San Diego Sept 18-20

September 9, 2019

September 18 – 20 at the Sheraton San Diego Hotel & Marina
Author of Brain on Fire Susannah Cahalan to Deliver Summit Keynote Speech
Master of Ceremonies Allie LaForce to honor awardees at the Celebration

September 9, 2019 — More than 800 rare disease patients, advocates, and stakeholders from around the globe will gather at the Sheraton San Diego Hotel & Marina in San Diego, California on September 18-20, 2019 for the Global Genes® 8th Annual RARE Patient Advocacy Summit and RARE Champion of Hope Celebration. The annual Summit is the largest educational event for rare disease worldwide and is presented in TED-style keynotes to deliver educational content ranging from the latest in care to research and therapies in a compelling, digestible format.

DETAILS: Nearly 100 speakers are expected for the 8th annual RARE Patient Advocacy Summit on September 18-20. The multi-day event features expert speakers, poster presentations, networking opportunities and rare disease resource exhibitors. The agenda features four learning tracks to help attendees navigate the complex world of rare disease and aims to offer content for all experience levels and a wide range of interest areas including: Caring for Yourself and Others While RareBuilding and Activating Your CommunityPatients as Drivers in Drug DevelopmentWhat’s Now: Innovations in Rare Disease and the RARE Entrepreneur Bootcamp.

New York Post reporter, Susannah Cahalan, and the New York Times bestselling author of Brain on Fire: My Month of Madness, will present the keynote session detailing her experience suffering from an incredibly rare anti-immune disorder known as anti-NMDA receptor encephalitis which affects the brain’s activity including memory and even breathing. Cahalan went from waking up alone in a hospital room at just 24 years old to a lifesaving diagnosis which, now at 34, allowed her to see her horrifying experience turned into a Netflix movie last year.

Following the RARE Patient Advocacy Summit, the Global Genes RARE Champion of Hope Celebration on September 20 will honor patients, scientists and advocates of the rare disease community and recognize their dedication to advancing efforts for rare disease around the world. The celebration will be attended by celebrities and VIPs to honor the 2019 awardees including the evening’s Master of Ceremonies and TNT basketball reporter Allie LaForce.


  • Global Genes RARE Patient Advocacy Summit – Wednesday, September 18, 2019 – Friday, September 20, 2019
  • Global Genes RARE Champion of Hope Celebration – Friday, September 20, 2019 at 7:30 p.m., blue carpet arrival at 6:30 p.m.

WHERE: Sheraton San Diego Hotel & Marina, 1380 Harbor Island Drive, San Diego, California

REGISTRATION: For more information and to register for the RARE Patient Advocacy Summit or RARE Champion of Hope Celebration please visit

MEDIA: Media, photographers and camera crews are welcome with prior approval at both the RARE Patient Advocacy Summit and the RARE Champion of Hope Celebration. Please contact: Nicole Freeman, The ACE Agency, (909)203-3905, [email protected].

SPONSORS: Global Genes is pleased to welcome Champion Sponsor Horizon Therapeutics, Exhibitor Pavilion Sponsor PRA Health Sciences, Presenting Sponsors Eversana and Takeda, and Title Sponsor Mallinckrodt Pharmaceuticals for the 2019 RARE Patient Advocacy Summit.

Summit Sponsors also include Platinum Sponsors Genentech, Gilead Sciences,  Illumina, Retrophin, Sanofi Genzyme; Gold Sponsors Abeona Therapeutics, Akcea Therapeutics, Alnylam Pharmaceuticals, Amicus Therapeutics, AveXis, Biogen, Biomarin, BridgeBio, Daiichi-Sankyo, Ipsen, Novelion Therapeutics, Pfizer, Recursion; Silver Sponsors Acceleron, Agios Pharmaceuticals, Aldevron, Alexion Pharmaceuticals, AllianceRX Walgreens Prime, Audentes Therapeutics, AVROBIO, Blueprint Medicines, Catalyst Pharmaceuticals, Epizyme, Insmed, Intercept, Ionis, Leadiant Biosciences, Neurocrine Biosciences, Novartis Pharmaceuticals, Ovid Therapeutics, PTC Therapeutics, Recordati Rare Diseases, Regeneron Pharmaceuticals, REGENXBIO, Sangamo, Sobi, Spark Therapeutics, Strongbridge Biopharma, UCB, Ultragenyx Pharmaceutical, and Vertex Pharmaceuticals.


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. If you or someone you love have a rare disease or are searching for a diagnosis, contact Global Genes at 949-248-RARE or visit the resource hub at