Making lives better starts here.

The Cystinosis Research Network's vision is the acceleration of the discovery of a cure, development of improved treatments and enhancement of quality of life for those with Cystinosis.

Learn More


The Cystinosis Research Network's vision is the discovery of improved treatments and ultimately a cure for cystinosis.

Learn More

Family Support.

The Cystinosis Research Network offers a variety of Family Support services such as an article library, support groups, and family conferences.

Learn More

Education and Awareness.

The Cystinosis Research Network educates the public and professional community about cystinosis, is actively involved in the rare disease community, and offers educational scholarships to individuals with cystinosis and their siblings.

Learn More

Dedicated to a cure. Committed to our community.


2019 Family Conference

Adult Leadership Application

Cystinosis is a rare, genetic metabolic disease that causes the amino acid cystine to accumulate in various organs of the body. Without specific treatment, children with Cystinosis develop end stage kidney failure at approximately age nine. The availability of cysteamine medical therapy has dramatically improved the natural history of cystinosis, so that well-treated cystinosis patients can live into adulthood.

Learn More

Latest News

Cystinosis Ireland Research Opportunities 2019January 18, 2019
Applications from those interested in cystinosis research are being accepted through April 1st. Read more...
Miracle Flights January 18, 2019
If you are in need of airfare or specialized care or a second opinion, Miracle Flights could help. Call 1-800-359-111 or Read more.
Eternal Support: Father Gets Tattoos of Son's Cystinosis Scars December 12, 2018
"My hope was to show my son that he is not in this alone. I’ve got him. I always will..." Read more…

Resources/Support Groups/Popular Articles