Rare As One Partner
Global Genes is a 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 to inform and empower rare disease patients and other advocacy organizations.
These educational materials include interactive workbooks and workshops on 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 to help members of the public better understand rare diseases and advocate for the advancement of rare disease care, treatment and cures.