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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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...
Cystinosis community member Rebekah Palmer authors, “A Letter to My Friend” January 09, 2015
A Letter to My Friend A book written for teenagers, by a teenager. If you are a young person not quite on your own, in college or a young adult, this book was written with you in mind. The...
Art Exhibit Deadline Extended to March 1 January 08, 2015
The Cystinosis Research Network is hard at work on a brand new project for our worldwide community! “Dream, Achieve, Inspire” is an art exhibit that will debut at the 2015 CRN Family Conference in...
CRN proud to sponsor the KDIGO December 18, 2014
CRN was proud to sponsor the KDIGO (Kidney Disease Improving Global Outcomes) Controversies Conference on Nephropathic Cystinosis, held December 11-13 in Lisbon, Portugal.  Christy Greeley,...
2014 Fall/Winter Newsletter Released November 21, 2014
The CRN 2013 Fall/Winter edition of the newsletter, The Cystinosis Advocate, is available now. Please go to the News/Newsletter link to view it.
Questions for the Cystinosis Community November 19, 2014
Hello! The Education and Awareness committee is seeking input from the Cystinosis community about our focus over the next few years to best meet the needs of our community. Your input to the...
Tee Fundraiser November 18, 2014
Hi All! I've been dreaming of this day for MONTHS! Today is a miracle, the tee shop is now OPEN! I've teamed up with my favorite graphic designers Olive Lane and Danielle Burkleo of Take Heart to...
The Cystinosis Research Network Cordially Invites You and Your Family to Join Us for One of Our Texas Regional Family Dinners November 13, 2014
HOUSTON DINNER - Thursday, December 4, 2014 Guest Speaker: Ewa Elenberg, MD Attending Physician Renal Services, Texas Children’s Hospital Location: Churrasco’s River Oaks, 2055 Westheimer Road,...
Running in Honor of Livia & Mason Stilke November 09, 2014
We are running the Hot Chocolate 5k/15k Race in Chicago for the Cystinosis Research Network. On November 9th, we will proudly run in honor of Mason and in loving memory of Livia Grace. We are...

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