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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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...
CRN Announces 2016 Research Grant Awardees November 05, 2015
CRN has funded three new research projects for 2016 as a result of its recent call for proposals. These grants represent nearly a quarter of a million dollars in new research funding. Read more...
Cystinosis Transition Management Tool Now Available November 05, 2015
CRN is proud to announce the publication of this user friendly concise tool with management guidelines. It was developed by pediatric and adult providers with experience in the care of patients...
Luncheon and Discussion on Cystinosis in Los Angeles August 25, 2015
The Cystinosis Research Network cordially invites you and your family to join us for:Luncheon and Discussion on CystinosisSunday, September 27, 2015W Los Angeles - Westwood930 Hilgard Avenue, Los...
Raptor Pharmaceutical Receives FDA Approval of Expanded Label for PROCYSBI® to Treat Children Aged 2-6 Years with Nephropathic Cystinosis August 17, 2015
NOVATO, Calif., August 17, 2015 – Raptor Pharmaceutical Corp. (NASDAQ: RPTP) today announced that the U.S. Food and Drug Administration (FDA) approved the expanded use of PROCYSBI® (cysteamine...
Rare Disease Artists’ Work to Travel Globe to Raise Awareness Art Showcase Debuts to Record Attendance August 11, 2015
FOR IMMEDIATE RELEASE Contact: Christy Greeley Executive Director Phone: 847-204-6004 Email: This email address is being protected from spambots. You need JavaScript enabled to view it. // ...
“Dream, Achieve, Inspire” International Artwork Showcase Unveils Rare Disease Patients’ Creativity June 11, 2015
Chicago Hosting Cystinosis Research Network Conference Mid-July FOR IMMEDIATE RELEASE Contact: Christy Greeley Executive Director Phone: 847-204-6004 Email: This email address is being protected...
The 2015 CRN Newsletter Has Arrived May 21, 2015
This newsletter catches up on the latest CRN happenings, including information on the CRN Family Conference: “Winds of Change” to be held July 16 – 18 in Chicago. As our community grows, this event...

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