Cystinosis Worldwide
| Country | Foundation | Website |
|---|---|---|
| USA | Cystinosis Research Network | http://www.cystinosis.org/ |
| USA | Cystinosis Foundation USA | http://www.cystinosisfoundation.org/ |
| USA | Cystinosis Research Foundation | http://www.natalieswish.com/ |
| UK | Cystinosis Foundation UK | http://www.cystinosis.org.uk/ |
| Germany | Cystinose-Selbsthilfe (Cystinosis Self Help, Germany) | http://www.cystinose-selbsthilfe.de/ |
| Italy | Italian Cystinosis Association | http://www.cistinosi.it/ |
| Ireland | Cystinosis Ireland | http://cystinosis.ie |
| Netherlands | Cystinosis Netherlands | http://www.cystinose.nl/ |
| South Africa | Cystinosis Netherlands | http://www.charitysa.co.za/cystinosis-support-group-south-africa.html |
| France | Orphan Europe | http://www.cystinosislife.com |