Cystinosis Research Network

Seeking Volunteers for Male Fertility in Cystinosis Study

Men 18+ living with nephropathic cystinosis are currently being recruited for a research study, Clinical and Molecular Assessments of...

The Cystinosis Research Network announces the expansion of our Board with two new Directors. Their experience, perspectives and dedication...

A global initiative has been announced: the Cystinosis Warrior Impact Program. Our goal is to support, help or find...

On May 7, 2022 we celebrate the 5th Annual Cystinosis Awareness Day. This is an opportunity to educate the...

Gail Potts and her South Carolina team are back at it! After a successful inaugural event last summer, Gail...

Diet and exercise will be the next topics of conversation during the Cystinosis Sessions quarterly Zoom call. Join our...

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

Join The Hilltop and Dicks Family for a fundraiser to benefit sweet Elle. Elle was diagnosed with cystinosis and...

The Dicks Family sat down for a candid conversation with Daniel Levine from Global Genes. During the latest podcast,...

This summer we reached a milestone – over $40,000 in scholarships awarded since our program’s inception. Congratulations to the...