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.


2009 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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Dinner and Discussion on Cystinosis - Saturday, May 3, 2014 March 17, 2014
The Cystinosis Research Network cordially invites you and your family to join us for: Dinner and Discussion on CystinosisSaturday, May 3, 2014 Andiamos6676 Telegraph RoadBloomfield Township, MI...
Two physicians added to CRN Medical Advisory Board February 28, 2014
CRN is  pleased to announce the addition of two physicians to our Medical Advisory Committee, Dr. Rachel Bishop, an ophthalmologist at the National Eye Institute/NIH and Dr. Mihir Thacker, an...
Raptor Scholarship Fund launched in honor of Rare Disease Day February 27, 2014
In February, the world celebrates the 7th annual Rare Disease Day, coordinated by EURORDIS (Rare Diseases Europe) and NORD (National Organization for Rare Disorders) with events in over 70...
Cystinosis Community Celebrates Rare Disease Day through Med Art February 26, 2014
Recently, Jen Wyman and Clinton Moore began posting inspirational arrangements of their children’s morning pills on Facebook, some happy, some sad, some representative of quotes that moved them in...
Medical College of Georgia Cystinosis Project Presentation February 24, 2014
Click here to watch the presentation
Advocacy Runs In The Genes February 19, 2014
Written by Domenica Farishian, for on Wednesday, February 19, 2014 A Hicksville mother and daughter are an unstoppable team in their mission to raise awareness and education about...
Marybeth Krummenacker to participate in “Navigating the Diagnosis and Care of a Child with a Rare Disorder” February 18, 2014
Rare Disease Day 2014: Join Together for Better Care, Pediatric Grand Rounds- Rutgers New Jersey Medical School, February 28, 2014 Newark, NJ, February 18, 2014 – On February 28th, 2014, we...
"Living with Cystinosis: A Closer Look" patient video now available January 29, 2014
“Living with Cystinosis: A Closer Look”. This video is now available at and offers information about the symptoms, impact and management of the ocular...
Dinner and Discussion on Cystinosis January 16, 2014
Thursday, February 6, 2014The Willett House20 Willett AvenuePort Chester, New York 10573(914) 939-7500 6:30 PM Cocktails7:00 PM Dinner & PresentationFollowed by...
Dinner and Discussion on Cystinosis - January 25, 2014 January 06, 2014
The Cystinosis Research Network cordially invites you and your family to join us for: Dinner and Discussion on Cystinosis Saturday, January 25, 2014Racquet Club - Ladue1600 Log Cabin LaneLadue,...
Kidney Camp at Frost Valley - 2014 Applications Available January 03, 2014
Hello friends, families and colleagues! Initial applications for Kidney Camp at Frost Valley YMCA for Summer 2014 are now available at! The deadline for...
Subjects needed for Outcome and Quality of Life in Adults Study December 27, 2013
About the Study:  Angela Ballantyne, Ph.D. and Doris Trauner, M.D., of the UCSD School of Medicine, are conducting a questionnaire-based research study to learn more about outcome and...

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