Cystinosis resources

Online resources for patients with cystinosis

Remember that you're not alone. The resources below can help you meet others living with cystinosis, learn about advocacy programs, explain what cystinosis is, and much more.

The Cystinosis Foundation

The Cystinosis Foundation is a nonprofit organization with more than 30 years of international experience supporting and educating families and the medical community. It distributes materials, funds research, and hosts annual conferences.

Cystinosis Research Foundation (CRF)

CRF supports research that aims to improve the quality of life of patients with cystinosis, find better treatments, and ultimately find a cure.

Cystinosis Research Network (CRN)

CRN is an all-volunteer, nonprofit organization dedicated to supporting and advocating for research, providing family assistance, and educating the public and medical communities about cystinosis.

Global Genes

Global Genes is a nonprofit advocacy organization for patients and families fighting rare and genetic diseases, including cystinosis. Its mission is to eliminate the challenges of rare disease.

The National Organization for Rare Disorders (NORD)

NORD is a patient advocacy organization dedicated to people with rare diseases and the groups that help them. NORD provides patients and families with advocacy information, assistance programs, and connections to patient organizations.

Check out our list of words related to cystinosis and their definitions in our glossary