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Cystinuria Support Network

Contacts

To join the online mailing list, please send an email outlining your experiences to Sue Holden.

To report any problems, ommissions or mistakes on the site, please contact the Webmaster.

Credits

Content

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.

Website Design

Website design by Insider Sites.

Articles

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.

Glossary

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.

Email Lists, Websites etc.

Keith and Sylva Swenson spent a lot of time setting up the original email list on Listserv. The group served us well for nearly seven years and was a revolution in the way we communicated with each other. Thank you guys.

Pete Ollerenshaw learned HTML in order to provide us with our first site. It enabled many more people to contact us and receive assistance from other members. Thanks Pete, you helped put us on the map.