Of course the CSN isn’t the only source of information available on the Internet:

Medline Documents

The starting address is:

Click DATABASE ACCESS, and click yourself through to FREE ACCESS and FREE grips-WebSearch, select Free MEDLINE and more and LOGIN, Select DataBase MEDLINE (since 1966) and open database.
You will be led to the SEARCH FORM. If you put (for example) CYSTINURIA into the 1st line and start SEARCH, the result will be over 900 hits.

CSN France – ARIC

Cystinurie Support Network France,
Association pour la Recherche et l’Information sur la Cystinurie
President : Jerome Defazio
Medecine Staff : Pr Eric Lechevallier (Uro – Marseille), Pr Michel Daudon (Biologist – Paris), Pr Bertrand Dussol (Nephro – Marseille), Dr Elisabeth Caniot (Nephro – Marseille), Pr Bertrand Knebelmann (Nephro – Paris).
Address: CSN France – ARIC
341, Rue Castors Isabella
13240 Septemes les Vallons
FRANCE (Marseille)
Phone : +33(0)491 655 975
Mobile : +33(0)620 145 567
Fax : +33(0)173 720 078
Web :

International Cystinuria Foundation

The goal of the ICF is to strengthen, educate, and further the general well being of the cystinuric community. They focus on making the best cystinuria-related educational resources easily at hand, and fostering the development of a community interested in learning about cystinuria and managing the disease.

The ICF website has articles and a forum which includes “Find a Doctor” and “Ask the Doctor”