Find all needed information about Cystinuria Support Network. Below you can see links where you can find everything you want to know about Cystinuria Support Network.
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.
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.
https://cystinuria.net/who-are-we/
The Cystinuria Support Network is was founded in 1992 by Jann Ledbetter, a mum with two daughter with cystinuria. When her daughters were first diagnosed, Jann looked for additional information about cystinuria and some kind of support network. What she needed more than anything else, was to be able to speak with someone who understood…
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
https://cystinuria.org/support/
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https://globalgenes.org/tag/cystinuria-support-network/
Aug 23, 2012 · Register to get the latest updates. Please join the RARE Portal to add diseases of interest to your personal profile. By creating a profile, you can receive news, resources and updates related to this disease as well as many other benefits.
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.
https://www.guysandstthomas.nhs.uk/resources/patient-information/urology/cystinuria.pdf
Cystinuria is inherited (it runs in families). If you were to have a child with somebody who has cystinuria, then your child will also have cystinuria. If you were to have a child with somebody who carries a gene for cystinuria but does not have the disease, then your child has a one in two chance of having cystinuria.
https://www.uhb.nhs.uk/cystinuria.htm
Cystinuria is a rare condition that causes kidney stones. It affects approximately 1 in 7000 people and affects men and women equally. Symptoms usually occur between 10 and 30 years if age.
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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