RARE Advocacy Exchange
Global Genes’ RARE Advocacy Exchange is a virtual event designed to empower, equip, and elevate individuals with the leadership skills to help make a change through a series of 8 sessions. We’re creating a space where seasoned leaders and those new to their rare journey can come together to exchange knowledge, develop practical skills, and find the confidence to lead effectively.
Register NowUpcoming Global Genes Events
Browse and find upcoming Global Genes in-person
or virtual RARE disease events by date and location hosted around the world.
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RARE Drug Development Symposium
Registration Now Open for the 2025 RARE Drug Development Symposium, taking place September 3–4 in Boston. Designed for rare disease advocates, patients, and families, this immersive 1.5-day event offers hands-on learning, expert-led sessions, and collaborative workshops to help you confidently navigate the drug development process. Whether you’re just starting your research journey or building on existing efforts, this symposium will equip you with the tools, strategies, and connections to make meaningful progress.
RARE Advocacy Exchange
Global Genes’ RARE Advocacy Exchange is a virtual event designed to empower, equip, and elevate individuals with the leadership skills to help make a change through a series of 8 sessions. We’re creating a space where seasoned leaders and those new to their rare journey can come together to exchange knowledge, develop practical skills, and find the confidence to lead effectively.
Learn MoreUpcoming Community Events
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Past Global Genes Events
2024 RARE Drug Development Symposium
The 2024 RARE Drug Development Symposium, hosted by Global Genes in partnership with the Orphan Disease Center of the University of Pennsylvania, focused on innovative ideas from next generation change-makers.. This archived page includes the agenda, recordings of the sessions, key takeaways from each session, and stats from the event itself.
Learn More2023 RARE Advocacy Summit
The 2023 RARE Advocacy Summit convened rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners, and allies. Attendees gained insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies they could take home and implement to accelerate change.
Learn More2023 RARE Health Equity Forum
The RARE Health Equity Forum convenes stakeholders in the rare disease space to identify ways to better serve marginalized populations within the rare disease community. In its third year, the event focused on the theme of “Equity In Action” and sessions provided attendees with actionable tools and strategic insights to support underserved and/or underrepresented patients within their community.
Learn More2023 RARE Drug Development Symposium
The RARE Drug Development Symposium, hosted by Global Genes and the Orphan Disease Center of the University of Pennsylvania, equips advocates with the knowledge, skills and connections they need to advance therapy development for their communities. The 2023 event focused on collaboration – the foundation of success in rare disease research.
2022 RARE Patient Advocacy Summit
The Summit forged meaningful connections with others in the rare disease community for future collaboration. Sessions provide attendees with insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies they can take home and implement immediately to accelerate change.
Learn More2022 RARE Health Equity Summit
The RARE Health Equity Forum, hosted in partnership with the Rare Disease Diversity Coalition (RDDC) convenes rare disease stakeholders to identify collaborative efforts to address inequities in the care of patients with rare diseases. This event provided attendees with strategic insights and tools to empower and equip them to address racial, ethnic, gender, socioeconomic, and other disparities.
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