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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. ... We aim to support a strong and growing group of patients, families ...
https://cystinuria.org/support/
Support the ICF through Amazon Smile. Amazon Smile is a simple and automatic way for you to support the ICF every time you shop, at no cost to you. When you shop at smile.amazon.com, Amazon will donate a portion of the purchase price. ... The International Cystinuria Foundation 302 Belview Court Longmont, Colorado 80501-4779.
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://rarediseases.info.nih.gov/diseases/6237/cystinuria
May 12, 2015 · Cystinuria is an inherited condition characterized by a buildup of the amino acid, cystine, in the kidneys and bladder.This leads to the formation of cystine crystals and/or stones which may block the urinary tract. Signs and symptoms of the condition are related to the presence of stones and may include nausea, hematuria, flank pain, and/or frequent urinary tract infections.
https://cystinuria.net/what-is-cystinuria/
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://healthunlocked.com/cystinuria-support
We are a peer-support group for patients around the world with cystinuria to share stories and ask questions. Cystinuria is a very rare cause of kidney stones and patients rarely get chance to meet any others with the disease. This community provides the opportunity to link with other patients to enable dissemination of stories, advice and tips that others have found useful to manage the disease.
https://supportgroupsinkansas.org/node/2039
Online support group for those with the rare disease of cystinuria. Share with others who have similar experiences, and hear from those around the globe what has helped them on their health journey.
https://ghr.nlm.nih.gov/condition/cystinuria
Oct 29, 2019 · Cystinuria is a condition characterized by the buildup of the amino acid cystine, a building block of most proteins, in the kidneys and bladder. As the kidneys filter blood to create urine, cystine is normally absorbed back into the bloodstream. People with cystinuria cannot properly reabsorb cystine into their bloodstream, so the amino acid accumulates in their urine.
http://www.rarekidneystones.org/cystinuria/
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 [email protected] or visit the official registry site at New York University. Biobank
http://www.cystinuriauk.co.uk/
There is a new Rare Disease survey (The H-Care Survey) which we invite patients and their families with cystinuria to complete. It takes about 10 minutes and will help to understand the experiences of patients living with rare disease and allow comparison between different countries.
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