Useful links
In this section you will find some useful international reference links to get clinical information on Cystinosis. They are links about Scientific societies and patient associations.
- The European Rare Kidney Disease Reference Network https://www.erknet.org/index.php?id=home
- Cystinosis Network Europe: https://cystinosis-europe.eu/
- AIRG association pour l’information et la recherche sur les maladies rénales génétiques: www.airg-france.fr
- VML Vaincre les Maladies Lysosomales: www.vml-asso.org
- www.sfndt.org/sn/PDF/epublic/asso/AIRG/livrets/cystinose.pdf
- www.filiereorkid.com
- https://www.cystinosis.org.uk/
- Cystinosis Rare Disease Group UK: https://rarerenal.org/rare-disease-groups/cystinosis-rdg/
- Cystinosis Groep Netherlands: https://cystinose.nl/
- Cystinosis Ireland – www.cystinosis.ie
- Asociación Cistinosis España – www.grupocistinosis.org
- Associazione Cistinosi, Italy – www.cistinosi.it
- http://www.cystinosisfoundation.org/
- https://www.cystinosisresearch.org
- https://cystinosis.org
- https://rarediseases.org/rare-diseases/cystinosis/
- https://www.kidney.org/atoz/content/nephropathic-cystinosis
- https://www.kidney.org/atoz/content/rare-diseases/nephropathic-cystinosis-evaluation-and-management
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Acknowledgements
The authors gratefully acknowledge the advice and guidance provided by the external experts, Dr Cyril Goizet and Dr Graham Lipkin.
The authors extend special thanks to Cystinosis Network Europe (CNE), at http://cystinosis-europe.eu for their insightful review of this document. CNE received no honorarium or payment for this review.
Medical writing support was provided by Vivid Medical Communications, a member of the Lucid Group.
Date of preparation: September 2021.
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Patients & Caregivers: in case of need to report an adverse drug reaction, please refer to your physician, asking him to fill in and submit the relevant case report to the concerned Health Authority, according to the Pharmacovigilance requirements in force in your Country. Nevertheless, please be kindly reminded that each patient can report any such cases directly to the national reporting system.
Healthcare Professionals: in case you want to report an adverse drug reaction you become aware of, please report it to your Health Authority according to the requirements set by the pharmacovigilance legislation.
This informational website is not intended for residents of the United States.