Ensuring diversity, equity, and inclusion in rare disease organizations requires focus programs

RARE-X CEO Charlene Son Rigby joined a leading expert panel during a virtual event celebrating UCLA

In the 1980s, researchers completed the first natural history study of classical homocystinuria,

The Global Genes NEXT 2022: Redefining the Possible report, is an annual reflection on the status

In June 2016, the A-T Children’s Project launched the Global A-T Family Data Platform, an effort

Despite a growing number of diagnostic tools, it still takes an average of six years after symptom

Craig Martin, CEO of Global Genes, discusses the organization’s recent partnership with

Recently, Axios health care editor Tina Reed interviewed RARE-X founder and chief engagement

A new white paper and podcast present RARE-X’s novel way of developing Consent and Data-Sharing

The RARE-X Corporate Advisory Council will support RARE-X’s innovative mission and

Before patients contribute their medical information to a research study, they must work through a