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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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
2016 Spring/Summer Newsletter Released May 25, 2016
The CRN 2016 Spring/Summer edition of the newsletter, The Cystinosis Advocate, is available now. Please go to the News/Newsletter link to view it.
KDIGO Cystinosis Conference Report Now Available May 13, 2016
The meeting report from the Kidney Disease: Improving Global Outcomes (KDIGO) Cystinosis Controversies Conference is now published in the June issue of Kidney International and is also available...
Dr. Galina Nesterova Joins CRN's Medical Advisory Board April 21, 2016
Dr. Galina Nesterova completes CRN NIH Clinical Fellowship, takes position in Vancouver, B.C. Dr. Galina Nesterova has completed her 6 year CRN NIH Clinical Fellowship under the direction of...
Cystinosis Comic Book Series March 31, 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...
Raptor’s PROCYSBI® New Drug Submission Accepted by Health Canada with Priority Review March 29, 2016
NOVATO, Calif., March 21, 2016 -- Raptor Pharmaceutical Corp. (Nasdaq: RPTP) today announced that Health Canada has accepted for review its New Drug Submission (NDS) for PROCYSBI® (cysteamine...
CRN Announces 2016 Scholarship Application Deadline March 23, 2016
It is that time of the year again. From now until the deadline date of Aug. 15, 2016, CRN will be accepting applications for our two, annual $1,000 Scholarships. The first is an Academic...
Advocates in Washington, D.C. March 09, 2016
Over two hundred advocates (including some of our CRN families) were in Washington, D.C. as part of Rare Disease Week on Capitol Hill. You may have heard of a piece of legislation called the OPEN...
NORD and NBA Partner for Rare Disease Day February 29, 2016
The NBA and NORD are teaming up to celebrate Rare Disease Day 2016! This means you have an opportunity to attend the NBA games with free or discounted tickets. Plus, there are openings for rare...

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