New Philanthropic Push on Rare Diseases
July 13, 2026
Research on rare diseases will get a boost this fall as the philanthropic Chan Zuckerberg Initiative will open another round of grants through the Rare As One Network to study diseases with few or no treatment options. In Issues, Tania Simoncelli examines how this type of research, driven largely by patients and family-led groups alongside the traditional expert-driven research model, is producing faster discoveries and treatments. This shift also is “challenging long-held assumptions about knowledge production,” she writes, adding that government also must step up and “fully acknowledge and embrace patients as central stakeholders in the research ecosystem.”