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 dictionary to aid interested readers in understanding cystinuria-relevant scientific literature (Browse old archived versions of the website at the Internet Archive). 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. Since that time, the organization has developed an administration including a board of directors and officers. The website has undergone 3 major style revisions, to date, and continues to add educational material. The largest area of development has been in our community forums, which have grown to see hundreds of participating members from across the globe.

We are currently devoting much effort to hosting our annual Cystinuria Symposia, and aim to further develop the educational content of the online site. The future of the International Cystinuria Foundation is open ended, and highly dependent on the support of the cystinuric and medical communities. Most importantly, the Foundation is a means for the community to speak with one collective voice, and we intend to use that voice to effect changes that will return a benefit the community.