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RARE Health Equity Forum seeks to put ideas into action

Aliso Veijo, California — June 26, 2023 — The Third Annual RARE Health Equity Forum, a meeting organized by the patient advocacy organization Global Genes in partnership with the Rare Disease Diversity Coalition, will be held in San Diego in September with a focus on the theme of “Equity in Action.”

The RARE Health Equity Forum (formerly known as the RARE Health Equity Summit) brings together rare disease patient advocates, researchers, drug developers, and other rare disease community stakeholders to identify ways to better serve marginalized populations within the rare disease community. The event will run September 18 and 19 at the Sheraton San Diego Hotel & Marina on Harbor Island Drive in San Diego. The Health Equity Forum headlines Global Genes’ Week in RARE, a series of events that will take place at the venue including the RARE Advocacy Summit, the RARE Champions of Hope Awards, the Global Advocacy Alliance Meeting, and the RARE Corporate Alliance Meeting. 

“Over the past two years, we have worked as a community to learn about and discuss the biases, barriers, and challenges that marginalized communities face within rare disease,” said Charlene Son Rigby, CEO of Global Genes. “We recognize the need to work together to bring forward more meaningful approaches to tackling these challenges. That’s why we have assembled an agenda that will provide attendees with actionable tools and strategic insights to support underserved  patients within their community.”

Session topics will include how to ensure diverse patient populations in clinical trials, how to forge partnerships with community leaders, and how to leverage underutilized health services to support underserved populations.

“The Health Equity Forum plays a crucial role in amplifying the voices of marginalized populations within the rare disease community, as well as provides valuable information, resources, and strategies to empower individuals from these communities to advocate for themselves,” Jenifer Waldrop, Executive Director of Rare Disease Diversity Coalition, shared. “This annual event has provided a platform for education, networking, and advocacy, leading to increased visibility, empowerment, and positive systemic changes that address the unique needs of the historically marginalized populations.”

The RARE Health Equity Forum is sponsored by Horizon Therapeutics, Travere Therapeutics, Genentech, Harmony Biosciences, Amicus Therapeutics, Avidity Biosciences, Janssen, Merck, Moderna, and Chiesi. For more information about the RARE Health Equity Forum, please visit

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.

About the Rare Disease Diversity Coalition Black Women’s Health Imperative (BWHI) launched the Rare Disease Diversity Coalition (RDDC) to address the extraordinary challenges faced by historically underrepresented rare disease patients as encompassed by social determinants of health (SDOH) The Coalition brings together rare disease experts, health and diversity advocates, and industry leaders to bring about evidence-based solutions that alleviate the disproportionate burden of rare diseases on marginalized populations.

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