Resources

Patient Resources

Cystinuria Private Facebook Group
This is one of the best resources on the web for people dealing with Cystinuria and their caregivers.  The group is hosted by Gayle Sweeny.  It is a private group so you will have to apply and be accepted.
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Dear Healthcare Professional
A letter for patients to provide to healthcare professionals, giving them an overview of Cystinuria.
Download Letter

Cystinuria Registry
The International Cystinuria Registry is now operational. Participation of patients will help physicians and scientists learn more about this rare disease, and help design new treatments. To learn more about the Cystinuria registry at New York University, please send an e-mail to cystinuria@nyumc.org or visit the official registry site at New York University.
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The European Rare Kidney Disease Registry
The objective of EUROCYS registry is to collect consistent and comparative prospective clinical, biological, genetic and radiological data from patients (children and adults) with cystinuria and followed in European centers.
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Cystinuria UK
Written and designed by healthcare professionals from Guy’s and St. Thomas’ NHS Foundation Trust in (London, UK) with contributions from several patients.
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Physician Resources

The Rare Kidney Stone Consortium (RKSC)
The homepage of the RKSC, facilitating cooperative exchange of information and resources among investigators, clinicians, and patients, and researchers in order to improve care and outcomes for patients with rare stone diseases.
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UK Registry for Rare Kidney Diseases (RaDaR)
The homepage of the UK Registry for Rare Kidney Diseases (RaDaR). RaDaR is where healthcare professionals register patients and enter data.
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National Library of Medicine Articles on Cystinuria
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