participation

Recruiting for Health-Related Quality of Life Study

Cystinosis patients and caregivers are invited to participate in a study focused on measuring health-related quality of life (HrQoL)....

Clinical researchers from the Stanford Neuromuscular department are looking for individuals who have been diagnosed with Cystinosis Myopathy, to...

February 28th marks the 12th annual Rare Disease Day (RDD). Observed on the rarest day of the year, the...

The Rare Diseases Clinical Research Network (RDCRN) is hoping to learn how the COVID-19 pandemic impacts people who live...

Global Genes 2019 RARE Patient Advocacy Summit was attended by members of our cystinosis community. Natasha Faisca and Clinton...