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.


2015 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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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...
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...
Celebrating Rare Disease Day As One Community February 22, 2016
“Dare to Be Rare®” The HPS Network and the Cystinosis Research Network have partnered to create an enterprise focused on providing patient advocacy organizations an opportunity to increase...
Next UCSD Cystinosis Clinic to be held February 1 December 18, 2015
The next multidisciplinary clinic for cystinosis patients (all ages accepted) will be held at UCSD Rady Children's Hospital outpatient clinic on Monday, February 1, 2016, in Suite 200 at 7910...
2015 Fall/Winter Newsletter Released November 23, 2015
The CRN 2015 Fall/Winter edition of the newsletter, The Cystinosis Advocate, is available now. Please go to the News/Newsletter link to view it.
Watch the 2015 Family Conference/Dream, Achieve, Inspire Art Exhibit Video November 19, 2015
Cystinosis Research Network releases a new video from the 2015 Family Conference. Click here to watch! FOR IMMEDIATE RELEASE Contact: Christy Greeley Executive Director Phone: 847-204-6004...
Nephropathic Cystinosis November 10, 2015
Join us for Lunch, Networking, and Education Monday, December 7, 2015 A.I. duPont Hospital for Children 1600 Rockland Road Wilmington, DE 19803 302-651-4426 12:00-1:00pmLunch: Classroom 3...

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