Global Genes: Rare Patient Advocacy Summit

On behalf of the cystinosis community, CRN advocates will attend this rare disease summit to absorb information on the latest therapies and research and participate in collaborative workshops.

Global Genes has more information on their website and FAQs page. “As the largest gathering of rare disease patients, caregivers, thought leaders and other rare disease stakeholders in the world, the RARE Patient Advocacy Summit is an unparalleled opportunity to forge meaningful connections with other rare advocates and take home actionable strategies and tools to accelerate change.”

Above: Clinton Moore (left) and Katie Morrison (right) at the 2018 Rare Patient Advocacy Summit.