Press Releases

Global Genes® to Host 7th Annual Rare Patient Advocacy Summit October 3-4

June 28, 2018

ALISO VIEJO, Calif. – June 28, 2017 – More than 800 rare disease patients and advocates from around the globe will gather at Hotel Irvine in Irvine, California on October 3-4, 2018 for Global Genes® 7th Annual Rare Patient Advocacy Summit. The Summit is the largest educational event for rare disease patients and advocates worldwide. Offering five specialized learning tracks and led by more than 100 rare disease experts, the event equips and activates those affected by rare disease.
TEDx presenter, speaker, trainer, award winning artist, and the author of the Outstanding Book of the Year Award 2015 IPPY New York, Super Power Baby Project, Rachel Callander, was announced as the 2018 Keynote Speaker for the 7th Annual Rare Patient Advocacy Summit. When her daughter, Evie, was born with a rare condition, the award-winning photographer, Callander, used her talents and the power of language to focus on Evie’s “super powers”, ultimately resulting in her life-affirming work, The Super Power Baby Project. Today Callander’s photographic art book features stunning photos of children born with rare conditions and offers a fresh perspective and a strong message: rare diseases bring challenges and grief, but also much to be celebrated.
Global Genes® is honored to announce FOX11 and Good Day LA’s morning reporter, meteorologist, and rare disease ambassador, Maria Quiban, will host the Thursday night RARE Champion of Hope Award celebration. Quiban is a passionate advocate who proudly utilizes her platform to campaign for those affected by rare disease. After losing her husband to an 18-month long battle with Glioblastoma, a rare brain cancer, in December 2015; Quiban became a champion for caregivers, recently briefing senators and policy makers on Capitol Hill with Global Genes and National Alliance for Caregiving.
More than 100 speakers are expected for the 7th Annual Rare Patient Advocacy Summit. The agenda features multiple learning tracks and educational sessions to help attendees navigate the complex world of rare disease. Learning tracks offer content for all experience levels including: Living with a Life-Altering Condition, Becoming a Successful Architect for Your Health and Disease Community, Building on Advances in Drug Development, Science and Technology that Drive Innovation and the Entrepreneurial Readiness Bootcamp.
More than 30 million people in the United States are living with rare diseases, which equates to 1 in 10 Americans affected by the more than 7,000 rare diseases. The RARE Patient Advocacy Summit is a source of motivation and activation for those families whose lives have been affected by rare disease. Annually, corporate stakeholders attend the event to become immersed in rare disease advocacy and gain valuable knowledge on patient and caregiver perspectives.
Global Genes® is pleased to welcome Presenting Sponsors PRA Health Sciences and Shire as well as Title Sponsor Horizon Pharma for the 2018 Rare Patient Advocacy Summit. To date, Summit Sponsors also include: Genentech, Gilead, Mallinckrodt Pharmaceuticals, Pfizer, Retrophin, Sanofi Genzyme, Abeona Therapeutics, Akcea Therapeutics, Alexion, Alnylam Pharmaceuticals, Amicus Therapeutics, Biomarin, Bridgebio, Novartis, Atlantic Research Group, Audentes Therapeutics, Avexis, Biogen, Boler-Parseghian, Ionis Pharmaceuticals, Leadiant Biosciences, Ovid Therapeutics, PTC Therapeutics, Recordati, Regeneron, Sobi, Spark Therapeutics, Strongbridge Biopharma, Ultragenyx Pharmaceuticals.
For more information and to register for the Rare Patient Advocacy Summit
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.
Media Contact:
Tori Elder, The ACE Agency, 702-413-8625, [email protected]
Global Genes® to Host 7th Annual Rare Patient Advocacy Summit October 3-4
Rachel Callander Announced as 2018 Keynote Speaker and FOX11’s Maria Quiban to Host RARE Champion of Hope Awards