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RARE Patient Advocacy Virtual Summit

Each year Global Genes convenes one of the world’s largest gatherings of rare disease patients, caregivers, advocates, healthcare professionals, researchers, partners and allies. Due to the COVID-19 global pandemic, and the threat this poses to the health and safety of our rare disease community, we are replacing this highly-anticipated event with the Global Genes LIVE! A RARE Patient Advocacy (un)Summit.

Throughout September, a variety of interactive and educational online events, meet-ups, workshops and performances will provide members of the rare disease community with opportunities to connect and engage with each other. Participants will gain insights about the latest in rare disease innovations, best practices for advocating on an individual and organizational level, and actionable strategies they can implement immediately to accelerate change.



September 15-25, 2020



Virtual Event


This event has ended.

RARE Patient Advocacy Virtual Summit