The Global Genes Next 2021 Report: A Time for Resilience and Ingenuity, written by Daniel Levine is

This day, this week, this month has served as an essential connecting point for rare disease

Simon Frost, the newest addition to the RARE-X board of directors, describes himself as an

Further development of data standards and governance, as well as additional case testing, is made

Jason Colquitt, the newest addition to the RARE-X board of directors, remembers the exhaustion he

Cynthia Grossman, the newest addition to the RARE-X board, says she’s “obsessed with the

The development of patient registries and natural history studies for rare diseases are critical to

New members will enhance RARE-X’s programs, pilots, and operational expansion with strategic

Data standards are a big topic that, among other things, involve how data are measured, recorded,

For Teneasha Washington, the problem of diversity in rare disease advocacy and research is apparent

New RARE-X DEI program assures the diversity of the rare disease community is represented in the