RARE Patient Advocacy (un)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 pandemic, and the threat it poses to the health and safety of the rare disease community, they replaced 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.

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