A note from the founder, Jann Ledbetter
The Cystinuria Support Network has been developed to provide a resource for putting individuals in touch with each other for support and practical advice. Since no one can understand the issues like those who are sharing the same experience, the Network allows us to come together with our strengths, hopes and concerns to offer support and understanding to each other.
I began my letter writing campaign in 1994 and I have to say that it was a lot of work but tremendously rewarding. I have talked to many people who have told me how they have longed to be in touch with someone else who has Cystinuria and I have been so glad to be able to give these people a long list of names of people that they can call or write. I believe we all have so much to share with each other.
Information regarding the CSN, the email lists and this website can be obtained by emailing Sue Holden, one of the current moderators.