If you would like to join our online support group, the easiest way is to go to the mailing lists webpage and follow the instructions on the site.

If you would like to contact someone at the Cystinuria Support Network please use the contact form:



All content, other than the articles and personal stories, was collected together over a period of six months and edited into the Stone Owners Manual. The Manual was published in the third newsletter. Members were asked to remember their first questions to the group, and any other information they would have found most useful when they were first diagnosed. The group wanted a resource that they could share with newly diagnosed people and their families which contained all the information they wished that they had at that upsetting and confusing time. Thanks go to all the CSN members on the email list in 1998 who contributed to the Manual.


All the articles are the copyright of their authors unless otherwise stated. They were provided, free of charge, by some of the most well renowned doctors who have taken a special interest in Cystinuria. Without these Doctors to keep us on the straight and narrow, and to recommend our group to their patients, we would not have such a sensible, vibrant support network today. Thank you.

Personal Stories

The personal stories were provided by CSN members in response to a request in the first newsletter. They are special, unique but also contain some of the most common threads in people’s stories. We are very keen to add to this section, as sharing experiences is the most important part of our group’s work.


Janet originally wrote the Glossary for her own use. When we were looking for useful information to place into the third newsletter she offered it to us. Thank you, Janet. I know many people find it useful.