Rare Disease Patient Advocates Gather in San Diego for a Week of Events to Connect, Learn, and Empower
June 27, 2023
Aliso Veijo, California —June 27, 2023—Members of the rare disease community from around the world will gather in San Diego in September for Global Genes’ Week in RARE, a set of events for patient advocates to network, learn, and inspire each other.
Week in RARE includes the RARE Health Equity Forum, the RARE Advocacy Summit, the RARE Champions of Hope Awards, and meetings for Global Genes’ Global Advocacy Alliance and its RARE Corporate Alliance. The events will run successively September 18 through 21 at the Sheraton San Diego Hotel & Marina on Harbor Island Drive in San Diego.
“By bringing these events together in a single time and place, we are creating an unparalleled opportunity for rare disease advocates to engage with each other, build relationships, and help them understand what they can do to change what it means to live with a rare disease diagnosis,” said Charlene Son Rigby, CEO of Global Genes. “In addition, these events will help patients navigate the complicated landscape of healthcare more effectively, offer patient organizations solutions to expand their reach and improve their value, and allow the entire rare disease community to understand the power they have to accelerate the development of treatments and therapies.”
The RARE Health Equity Forum (formerly known as the RARE Health Equity Summit), which runs September 18 and 19, brings together rare disease stakeholders to identify ways to better serve marginalized populations. The sessions will provide attendees with actionable tools and strategic insights to support underserved and underrepresented patients within their communities.
The RARE Advocacy Summit (formerly known as the RARE Patient Advocacy Summit), one of the world’s largest gatherings for the rare disease community, runs September 19 through 21. It provides attendees with insights about the latest rare disease innovations, best practices for advocating, and actionable strategies they can use to implement and use immediately in the areas of Personal Support and Advocacy, Community Building and Sustainability, Research and Research Enablement, Collaborations in research and insights into Science innovations.
The RARE Champions of Hope Awards will be held during the RARE Advocacy Summit on September 20. The awards recognize members of the rare disease community for their innovative approaches to research, programming, and advocacy to create meaningful impact in the rare disease space.
The content and experience for attendees at both RARE Advocacy Summit and RARE Health Equity Forum will benefit rare disease patients, caregivers, patient advocacy group leaders, rare disease advocates, researchers and biopharma working in advocacy, research and contemplating how to better support patient community partners, but all are welcome.
“We hope that more attendees can take advantage of the unique content available during both events at the Week in RARE, and see the value that each event offers,” said Nicole Boice, Founder and Chief Mission Officer of Global Genes. “In addition to plenary and keynote sessions, attendees will benefit from focused tracks, working group sessions, and our new one-to-one format providing advocates time to consult with experts about a variety of topics. We want attendees to walk away with real actionable next steps that will drive progress for themselves and their communities.”
Content partners for Week in RARE include Rosamund Stone Zander Translational Neuroscience Center at Boston Childrens Hospital, Everylife Foundation, Rare Disease Diversity Coalition (RDDC), and Undiagnosed Diseases Network Foundation. A special thank you to sponsors for RARE Health Equity Forum: Champion sponsor, Travere, and Title sponsors, Genentech and Horizon and presenting sponsors for RARE Advocacy Summit: Horizon and Travere.
About Global Genes
Global Genes is a 501(c)(3) nonprofit rare disease patient advocacy organization dedicated to providing patients and advocates with a continuum of services to accelerate their path from early support and awareness through research readiness. Using a collaborative approach that involves biopharma, researchers and advocates with data as a central core, Global Genes also enables research and data collection through the RARE-X research program. Through this effort, Global Genes is building the largest collaborative patient-driven, open-data access initiative for rare diseases globally.