International Cystinuria Foundation
Encyclopedia
The International Cystinuria Foundation (ICF) is a Colorado
based nonprofit organization
that provides educational resources to individuals affected by cystinuria
. Its mission is to strengthen, educate, and further the general well being of the cystinuric community. The ICF serves an international audience through their website, and hosts a large community where cystinuric individuals, parents of cystinuric children, and physicians can share experiences and information for the purposes of education and support.
to aid interested readers in understanding cystinuria-relevant scientific literature
. In mid November, the first learning tutorial
was published, providing readers with a basic understanding of amino acid
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
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 501(c)(3) tax-exempt status by the Internal Revenue Service
(IRS), and classified as a public charity.
, nephrology
, genetics
, and psychological health 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 New York City
and one in Chicago
.
Colorado
Colorado is a U.S. state that encompasses much of the Rocky Mountains as well as the northeastern portion of the Colorado Plateau and the western edge of the Great Plains...
based nonprofit organization
Nonprofit organization
Nonprofit organization is neither a legal nor technical definition but generally refers to an organization that uses surplus revenues to achieve its goals, rather than distributing them as profit or dividends...
that provides educational resources to individuals affected by cystinuria
Cystinuria
Cystinuria is an inherited autosomal recessive disease that is characterized by the formation of cystine stones in the kidneys, ureter, and bladder.-Signs and symptoms:Cystinuria is a cause of persistent kidney stones...
. Its mission is to strengthen, educate, and further the general well being of the cystinuric community. The ICF serves an international audience through their website, and hosts a large community where cystinuric individuals, parents of cystinuric children, and physicians can share experiences and information for the purposes of education and support.
History
The website www.cystinuria.org was founded on October 17 of 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 dictionaryDictionary
A dictionary is a collection of words in one or more specific languages, often listed alphabetically, with usage information, definitions, etymologies, phonetics, pronunciations, and other information; or a book of words in one language with their equivalents in another, also known as a lexicon...
to aid interested readers in understanding cystinuria-relevant scientific literature
Scientific literature
Scientific literature comprises scientific publications that report original empirical and theoretical work in the natural and social sciences, and within a scientific field is often abbreviated as the literature. Academic publishing is the process of placing the results of one's research into the...
. In mid November, the first learning tutorial
Tutorial
A tutorial is one 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 a certain task....
was published, providing readers with a basic understanding of amino acid
Amino acid
Amino acids are molecules containing an amine group, a carboxylic acid group and a side-chain that varies between different amino acids. The key elements of an amino acid are carbon, hydrogen, oxygen, and nitrogen...
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
Antibiotic
An antibacterial is a compound or substance that kills or slows down the growth of bacteria.The term is often used synonymously with the term antibiotic; today, however, with increased knowledge of the causative agents of various infectious diseases, antibiotic has come to denote a broader range of...
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
Incorporation (business)
Incorporation is the forming of a new corporation . The corporation may be a business, a non-profit organisation, sports club, or a government of a new city or town...
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 501(c)(3) tax-exempt status by the Internal Revenue Service
Internal Revenue Service
The Internal Revenue Service is the revenue service of the United States federal government. The agency is a bureau of the Department of the Treasury, and is under the immediate direction of the Commissioner of Internal Revenue...
(IRS), and classified as a public charity.
Symposia
A main goal of the ICF is to hold annual symposia where top experts in the cystinuria-related fields of urologyUrology
Urology is the medical and surgical specialty that focuses on the urinary tracts of males and females, and on the reproductive system of males. Medical professionals specializing in the field of urology are called urologists and are trained to diagnose, treat, and manage patients with urological...
, nephrology
Nephrology
Nephrology is a branch of internal medicine and pediatrics dealing with the study of the function and diseases of the kidney.-Scope of the specialty:...
, genetics
Genetics
Genetics , a discipline of biology, is the science of genes, heredity, and variation in living organisms....
, and psychological health 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 New York City
New York City
New York is the most populous city in the United States and the center of the New York Metropolitan Area, one of the most populous metropolitan areas in the world. New York exerts a significant impact upon global commerce, finance, media, art, fashion, research, technology, education, and...
and one in Chicago
Chicago
Chicago is the largest city in the US state of Illinois. With nearly 2.7 million residents, it is the most populous city in the Midwestern United States and the third most populous in the US, after New York City and Los Angeles...
.