The ICF has collated the many resources available to cystinuric families and healthcare providers across the world in the actively maintained list below.  If you spot an error in a link, or notice that our information is out of date, please do let us know by sending us an e-mail.

Please note that by following these web links you will be taken to sites outside of the ICF, and therefore the ICF is not responsible for the accuracy of information found within these sites. A link within this directory should not be mistaken as an endorsement for any opinions, statements, or products encountered outside of www.cystinuria.org.


Resources for Patients

Dear Healthcare Professional

A letter for patients to provide to healthcare professionals, giving them an overview of Cystinuria.

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.

Cystinuria Support Network

A website and resource for putting individuals in touch with each other for support and practical advice related to Cystinuria.


Resources for Physicians

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.

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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