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.

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

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Family Support.

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

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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.

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Dedicated to a cure. Committed to our community.


2017 CRN Family Conference

Mystery Diagnosis: Cystinosis

The Balancing Act on Lifetime

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.

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Latest News

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Cystinosis Scholarship Program January 18, 2017
Up to $50,000 in scholarships now available! Global Genes and Horizon Pharma have partnered to bring the Cystinosis community up to $50,000 in continued education scholarships. This includes but...
Future by Design December 14, 2016
A group of adults with Cystinosis formed the 'Future by Design' panel to improve tools and outcomes for future generations. Get a glimpse of their thoughts and aspirations in this video.
2016 Fall/Winter Newsletter Is Here! December 06, 2016
The CRN 2016 Fall/Winter edition of the newsletter is now available. Visit the News/Newsletter link to catch up on the latest developments within the Cystinosis community.
Chandler's Chance for Cystinosis December 01, 2016
An educational Cystinosis session and fundraiser being hosted by the Moore Family on Sat, Dec. 3.
Dr. Barshop UCSD Cystinosis Clinic November 30, 2016
Dr. Bruce Barshop is hosting a Cystinosis Clinic at the University of California at San Diego on January 23, 2017. They are looking for a few additional participants to make the workshop a...
Artist With Rare Disease Illustrates Importance of Life-Saving Medicines October 20, 2016
Super Heroes Save Lives One Comic Book At A Time LAKE FOREST, Ilinois — Oct. 24, 2016 — The Cystinosis Research Network (CRN), a Chicagoland based non-profit organization, has teamed up with an...
2017 Family Conference Information October 19, 2016
The Cystinosis Research Network is pleased to announce that its 2017 Family Conference will be held July 13 – 15 at the Snowbird Ski and Summer Resort located in Utah. Read More
Cystinosis Comic Book Series September 29, 2016
  Sign Up Today Receive your FREE copy of the Super Cysteamine Team comic book series by completing the fields below. Upon registration, you’ll receive the first installment in the trilogy...
Rare Lysosomal Diseases Gathering August 31, 2016
Cystinosis families are invited to hear Dr. Grimm present updates on Cystinosis at the WORLDfair 2016 in Minneapolis, MN on Oct. 1, 2016.
2016 CRN Scholarships Awarded August 31, 2016
The CRN has awarded $1,000 college scholarships to three deserving students with the Cystinosis community. Read More
New VP of Family Support Announced August 03, 2016
The Cystinosis Research Network welcomes Clinton Moore to the Board of Directors as VP of Family Support.
Cystinosis Art Gallery Now Available Online July 23, 2016
The first collection of art created entirely by Cystinosis patients is now available at

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