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What is Cystinuria? Cystinuria is an inherited condition that prevents the body’s retention of certain amino acids from excretory pathways. The clinical effect of cystinuria occurs in the urinary system where these amino acids collect in concentrations that are much higher than normal.
Cystinuria Support Network is a non-profit organisation offering support to persons with cystinuria and their families, friends and carers. Unless otherwise stated, information on this site has been provided by people with cystinuria who may not be medically qualified.
https://globalgenes.org/tag/cystinuria-support-network/
Aug 23, 2012 · Other Ways to Support; Cystinuria Support Network August 23, 2012 Imagine Living Life With Constant and Excruciating Kidney Stones – Meet Three Siblings Fighting Cystinuria ... You can login here to your account or you can register to start saving, exploring and sharing resources and news. Connect with our community now!
https://cystinuria.org/support/
The International Cystinuria Foundation 302 Belview Court Longmont, Colorado 80501-4779. Please be sure to include your name, return address, designation (optional), and dedication (optional) information. Please also indicate if you would like to remain anonymous (and thus not be posted to the website as a donor and financial supporter).
https://rarerenal.org/patient-information/cystinuria-patient-information/
The Cystinuria Rare Disease Group (RDG) is working together to understand more about Cystinuria. We want to find out how many people in the UK have Cystinuria and how it affects them. This means we could provide better information for newly diagnosed patients, and optimise treatment.
http://www.rarekidneystones.org/
Our Mission. The Consortium facilitates 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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