Press Releases

Global Genes Hosts World’s Largest Gathering of Rare Disease Stakeholders

May 17, 2019

Global Genes® Hosts World’s Largest Gathering of Rare Disease Stakeholders at the 8th Annual RARE Patient Advocacy Summit September 18-20

Author of Brain on Fire Susannah Cahalan Announced as 2019 Keynote Speaker

Aliso Viejo, Calif. (May 15, 2019) – On September 18-20, 2019 Global Genes® 8th Annual RARE Patient Advocacy Summit will bring together more than 800 rare disease patients and advocates from around the globe at Sheraton San Diego Hotel & Marina in California. The Summit experience is presented in TED-style keynotes to deliver educational content ranging from latest in care to research and therapies in a compelling, digestible format.

DETAILS: The world’s largest educational event for rare disease, the RARE Patient Advocacy Summit, will feature 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. The summit aims to offer content for all experience levels and wide range of interest areas including:

  • Caring for Yourself and Others While Rare
  • Building and Activating Your Community
  • Patients as Drivers in Drug Development
  • What’s Now: Innovations in Rare Disease
  • RARE Entrepreneur Bootcamp

New York Post reporter, Susannah Cahalan, and the New York Times bestselling author of Brain on Fire: My Month of Madness, joins Global Genes’ lineup as this year’s keynote speaker. Going far beyond a medical mystery, 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. Cahalan suffered from an incredibly rare anti-immune disorder known as anti-NMDA receptor encephalitis affecting the brain’s activity including memory and even breathing. Cahalan, thanks to her early diagnosis by Dr. Souhel Najjar, is grateful to help spread awareness of the terrifying disorder that could have taken her life.

The RARE Patient Advocacy Summit is a source of motivation and activation for those families whose lives have been affected by rare disease. Annually, rare disease stakeholders attend the event to become immersed in rare disease advocacy and gain valuable knowledge on patient and caregiver perspectives, helping Global Genes reach the more than 350 million people living with rare diseases around the world.

REGISTRATION: For more information and to register for the RARE Patient Advocacy Summit please visit

WHEN: September 18 – 20, 2019

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

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

Summit Sponsors also include Platinum Sponsors Genentech, Gilead Sciences, Inc., Illumina, Retrophin, Gold Sponsors Akcea Therapeutics, Alnylam Pharmaceuticals, Amicus Therapeutics, Inc., AveXis, BridgeBio, Daiichi-Sankyo, Novelion Therapeutics, Pfizer, Silver Sponsors Agios Pharmaceuticals, AllianceRX Walgreens Prime, Audentes Therapeutics, Inc., Catalyst Pharmaceuticals, Epizyme, Intercept, Neurocrine Biosciences, Novartis Pharmaceuticals, PTC Therapeutics, Recordati Rare Diseases Inc., Regeneron Pharmaceuticals, Inc., REGENXBIO, Sangamo, Spark Therapeutics, UCB, Ultragenyx Pharmaceutical, and Vertex Pharmaceuticals.

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

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.