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.
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...
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...
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...