Skip to main content

Resources for Patients and Families Impacted by Rare Disease

The GREGoR Consortium (Genomics Research to Elucidate the Genetics of Rare diseases) seeks to develop new ways of diagnosing people with rare genetic diseases that have not been solved using standard clinical approaches. For more information about how the Consortium works see the About Us page.

Family stories

Individual and family stories about experience and participation in rare disease research

read more