2016 CRN Scholarships Awarded

The CRN has awarded $1,000 college scholarships to three deserving students with the Cystinosis community.

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New VP of Family Support Announced

The Cystinosis Research Network welcomes Clinton Moore to the Board of Directors as VP of Family Support.

Cystinosis Art Gallery Now Available Online

The first collection of art created entirely by Cystinosis patients is now available at

2016 Spring/Summer Newsletter Released

The CRN 2016 Spring/Summer edition of the newsletter, The Cystinosis Advocate, is available now. Please go to the News/Newsletter link to view it.

KDIGO Cystinosis Conference Report Now Available

The meeting report from the Kidney Disease: Improving Global Outcomes (KDIGO) Cystinosis Controversies Conference is now published in the June issue of Kidney International and is also available at the KDIGO website as well as on the CRN website in the Article Library. Christy Greeley, CRN Executive Director, served as an patient advocacy representative and participated in the adolescent topic workgroup at the meeting held in December 2014 in Lisbon, Portugal. The report serves as an excellent update, enhancing our knowledge on the pathophysiology, diagnosis, and management of cystinosis.

Dr. Galina Nesterova Joins CRN's Medical Advisory Board

Dr. Galina Nesterova completes CRN NIH Clinical Fellowship, takes position in Vancouver, B.C.

Dr. Galina Nesterova has completed her 6 year CRN NIH Clinical Fellowship under the direction of Dr. Bill Gahl and has accepted a position at BC Children's Hospital of British Columbia, Vancouver, B.C. Patients can contact Dr. Nesterova via email at either This email address is being protected from spambots. You need JavaScript enabled to view it. or This email address is being protected from spambots. You need JavaScript enabled to view it.

The Cystinosis Research Network is indebted to Dr. Nesterova for dedicating a significant portion of her career to the treatment of hundreds of individuals with cystinosis. She has become an expert in the disorder and continues to be one of our community's greatest advocates.

We are pleased to announce that she will be joining CRN's Medical Advisory Board and will thus continue her outstanding service to the cystinosis community.