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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Research.

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.

Overview

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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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...
2015 Cystinosis Research Network Call for Proposals March 27, 2015
Applicants may now submit proposals for the 2015 CRN Call for Research Proposals. Research proposals may be submitted to CRN for review and consideration. CRN utilizes a Scientific Review Board...
Bonner Paddock to speak at CRN 2015 Family Conference in Chicago March 26, 2015
Bonner Paddock is the Founder of the OM Foundation (OMF), which promotes the idea that any one person can make a difference if they dedicate themselves to look beyond their own personal limits to...
Luncheon and Discussion on Cystinosis - Saturday, May 9, 2015 March 23, 2015
Saturday, May 9, 2015 Hubbard Grille793 N. High Street Columbus, OH  43215 11:30 AM Reception / 12:30 PM Luncheon and PresentationQuestion and Answer Session to Follow  Guest...
New Medical Advisory Board Member Announced February 18, 2015
The Cystinosis Research Network is proud to announce a new addition to our Medical Advisory Board -- Patrick Gipson, M.D., Clinical Assistant Professor of Internal Medicine & Pediatrics,...
2015 Family Conference Announced January 30, 2015
The CRN Board is busy planning the 2015 Family Conference, to take place July 16-18 at the Doubletree by Hilton – Magnificent Mile hotel in Chicago, IL. This year’s theme is “Winds of Change” – our...
Dinner and Discussion on Cystinosis - Saturday, March 7, 2015 January 28, 2015
The Cystinosis Research Network cordially invites you and your family to join us for: Dinner and Discussion on Cystinosis Saturday, March 7, 2015 Hilton University Place8629 JM Keynes Drive...
Charity Golf Event Supporting Cystinosis Research Network January 19, 2015
Save the Date! June 6th2015 at 9 AM. Thanksgiving Point Golf Course Lehi Utah Cystinosis is working with me now to build a web page to register for the event. If you are interested in...

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