{{third-party, date=August 2016 The International Cystinuria Foundation (ICF) is a

Colorado Colorado is a U.S. state, state in the Western United States. It is one of the Mountain states, sharing the Four Corners region with Arizona, New Mexico, and Utah. It is also bordered by Wyoming to the north, Nebraska to the northeast, Kansas ...

-based

nonprofit organization A nonprofit organization (NPO), also known as a nonbusiness entity, nonprofit institution, not-for-profit organization, or simply a nonprofit, is a non-governmental (private) legal entity organized and operated for a collective, public, or so ...

that offers educational resources to individuals affected by

cystinuria Cystinuria is an inherited autosomal recessive disease characterized by high concentrations of the amino acid cystine in the urine, leading to the formation of cystine stones in the kidneys, ureters, and bladder. It is a type of aminoaciduria. ...

. Its mission is to enhance, educate, and promote the overall well-being of the cystinuric community. The ICF serves an international audience through its website and hosts a large community where individuals with cystinuria, parents of cystinuric children, and physicians can share experiences and information for educational and supportive purposes.

History

The website www.cystinuria.org was founded on October 17, 2002 and was opened to the public later that month. The initial site featured the first version of the Cystinuria.org community forum as well as a

dictionary A dictionary is a listing of lexemes from the lexicon of one or more specific languages, often arranged Alphabetical order, alphabetically (or by Semitic root, consonantal root for Semitic languages or radical-and-stroke sorting, radical an ...

to aid interested readers in understanding cystinuria-relevant

scientific literature Scientific literature encompasses a vast body of academic papers that spans various disciplines within the natural and social sciences. It primarily consists of academic papers that present original empirical research and theoretical ...

. In mid November, the first learning

tutorial In education, a tutorial is a method of transferring knowledge and may be used as a part of a learning process. More interactive and specific than a book or a lecture, a tutorial seeks to teach by example and supply the information to complete ...

was published, providing readers with a basic understanding of

amino acid Amino acids are organic compounds that contain both amino and carboxylic acid functional groups. Although over 500 amino acids exist in nature, by far the most important are the 22 α-amino acids incorporated into proteins. Only these 22 a ...

structure and function with an emphasis on cysteine and cystine. More tutorials were added covering the relevant topics of stone formation, stone prevention, and

antibiotic An antibiotic is a type of antimicrobial substance active against bacteria. It is the most important type of antibacterial agent for fighting pathogenic bacteria, bacterial infections, and antibiotic medications are widely used in the therapy ...

use (for patients with recurring infections). The development of educational tutorials continued into early 2004, when the site became the online home of the newly incorporated Cystinuria Foundation of America (CysFA). On August 8, 2005, following the successful organization of the first Cystinuria Sympoiusm, CysFA was dissolved and the International Cystinuria Foundation was incorporated in its place to reflect the goal of reaching out to affected individuals worldwide. On March 30, 2006, the ICF was awarded

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tax-exempt status by the

Internal Revenue Service The Internal Revenue Service (IRS) is the revenue service for the Federal government of the United States, United States federal government, which is responsible for collecting Taxation in the United States, U.S. federal taxes and administerin ...

(IRS), and classified as a

public charity A charitable organization or charity is an organization whose primary objectives are philanthropy and social well-being (e.g. educational, religious or other activities serving the public interest or common good). The legal definition of ...

Symposia

A main goal of the ICF is to hold annual symposia where top experts in the cystinuria-related fields of

urology Urology (from Ancient Greek, Greek wikt:οὖρον, οὖρον ''ouron'' "urine" and ''wiktionary:-logia, -logia'' "study of"), also known as genitourinary surgery, is the branch of medicine that focuses on surgical and medical diseases of t ...

nephrology Nephrology is a specialty for both adult internal medicine and pediatric medicine that concerns the study of the kidneys, specifically normal kidney function (renal physiology) and kidney disease (renal pathophysiology), the preservation of kid ...

genetics Genetics is the study of genes, genetic variation, and heredity in organisms.Hartl D, Jones E (2005) It is an important branch in biology because heredity is vital to organisms' evolution. Gregor Mendel, a Moravian Augustinians, Augustinian ...

, and

psychological health Mental health is often mistakenly equated with the absence of mental illness. However, mental health refers to a person's overall emotional, psychological, and social well-being. It influences how individuals think, feel, and behave, and how t ...

present educational information and cutting-edge research findings to general members of the cystinuric community. To date, the ICF has held three such symposia, two in

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and one in

Chicago Chicago is the List of municipalities in Illinois, most populous city in the U.S. state of Illinois and in the Midwestern United States. With a population of 2,746,388, as of the 2020 United States census, 2020 census, it is the List of Unite ...

References

*https://web.archive.org/web/20060615120247/http://www.cystinuria.org/aboutus.htm *https://web.archive.org/web/20050308151252/http://www.cystinuria.org/updates.htm

External links

Official siteCommunity forum
2005 establishments in the United States Health charities in the United States Non-profit organizations based in Colorado Organizations established in 2005 Medical and health organizations based in Colorado