RAO Partner

Rare As One Partner

Global Genes

Global Genes is a global nonprofit advocacy organization for individuals and families fighting rare and genetic diseases. The Chan Zuckerberg Initiative supports Global Genes in its mission to develop and share educational materials and workshops to help rare disease patients and advocacy organizations. 

These materials include interactive workbooks and workshops on patient community-led data collection, data sharing for science collaborations, data trusts and governance, and collaborative research networks. Over time, these materials will be translated into Spanish and become part of the Global Genes Rare University program. This online series of free courses is designed for people to better understand rare diseases and become advocates who work to advance rare disease care, treatment and cures.  

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Hear Rare Disease Stories

Listen to The Story Collider podcast featuring stories about patients who are driving progress against rare disease.