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.
The Cystinosis Research Network's vision is the discovery of improved treatments and ultimately a cure for cystinosis.
The Cystinosis Research Network offers a variety of Family Support services such as an article library, support groups, and family conferences.
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.
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.
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...
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...
November 18, 2014
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...
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.