Cystinuria Resources
Education | ICF Publications | Research Library | Links
The primary goal of the International Cystinuria Foundation is to make valuable resources openly available to the public including patients, family, and physicians alike. Given the rarity of the disease, current and reliable information is often difficult to come by. The International Cystinuria Foundation's main initiative is to develop a comprehensive resource base which is accurate, well maintained, and in line with the most recent research developments. We plan to focus much of our effort as an organization towards developing this collective body of reliable material throughout this year (2007).
For now, whether you are a newly diagnosed individual, a veteran brushing up before a doctors visit, or simply an interested friend or family member of someone affected by cystinuria, we hope you find this growing list of resources helpful.
Education
Education is key for a cystinuric patient. The cystinuric community is uniquely knowledgeable with regard to the details of their disease; often well beyond the level of general physicians. Cystinuric patients know that, with a proper understanding of the disease and a basic understanding of human physiology, the symptoms of cystinuria can be effectively managed. The International Cystinuria Foundation recognizes the enormous health benefits gained through patient self education and strives to facilitate this learning process. Through educational multimedia we are able to provide clear interpretations of (often difficult) concepts that appeal to interested readers of all backgrounds. From genetics and inheritance to the principles of stone formation, we aim to provide current, relevant, and accurate information with the goal of supporting cystinuric education.
ICF Publications
The ICF has dedicated a significant amount of funding to the creation and distribution of printed and video-based educational material for patients and doctors. Publications for print have been developed by ICF volunteers in collaboration with the larger cystinuric community. The Cystinuria Symposium videos showcase the most current research from the top professionals in the urological/nephrological and surgical fields, and are unique resources of great educational value to patients and physiciansalike.
Cystinuria Research Library
The primary source for all of our understanding of cystinuria is scientific research. Since its discovery in the early 1800's, cystinuria has been a topic of important biological history. From William Hyde Wollaston's discovery cystine to Archibald Garrod's landmark "Inborn Errors of Metabolism" to being the first transport disorder with identified genetic defects, this rare disease has been woven into the fabric of scientific advancement. These collected research publications provide both a historical account and a current context for our understanding of cystinuria.
Please be aware that these articles are available to ICF patrons only. While many of these articles are in the public domain, much of the Library's content is still under copyright, and permission is only granted for distribution to a defined group for the purposes of individual education. Terms and Conditions of Use and a disclaimer apply to all material found within.
Cystinuria Links
The International Cystinuria Foundation maintains a thorough directory of reputable sources for cystinuric education, support, and general related information.