Knowledge Center

DOWNLOAD USEFUL DOCUMENTS FROM THE KNOWLEDGE CENTRE, IN ORDER TO:

• Learn more about nephropathic cystinosis
• Learn how to coordinate effective communication with your healthcare team
• Discover ways to live the best possible life along your individual journey with cystinosis

Treatment

Medical advice on Treatment Advice from experts in the field of cystinosis> Download (.pdf)
Medical advice on kidney Transplantation Advices from experts in the field of cystinosis> Download (.pdf)

Testimonials

Être mère d’un jeune adulte atteint de cysnitose Lire les défis pour les parents lorsque votre enfant fait sa transition vers les soins aux adultes> Download (.pdf)
Stephanie's testimonial Stephanie is a young mother of two wonderful healthy children.> Download (.pdf)

Events

9th International Cystinosis Congress in Valencia, Spain - 30 June - 03 July 2016 > Link

Support

Nephropathic Cystinosis explained to Children English booklet > Download (.pdf)
Cistinosis nefropatica explicada para los ninos Spanish booklet > Download (.pdf)
Cistinose nefropatica explicada para crianças Portuguese booklet > Download (.pdf)
Cistinosi nefropatica spiegata ai bambini Italian booklet > Download (.pdf)

Useful Links

Useful links Orphan Europe> Link
AIRG associations> Link
Associazione Cistinosi> Link
Cystinosis Research Network> Link
Cystinosis Foundation US> Link
Cystinosis Foundation UK> Link
Cystinosis Research Foundation> Link
CURE cystinosis international registry> Link

Transition

Checklist before transition Find below a helpful checklist before transitioning from pediatric to adult healthcare.> Download (.pdf)
Medical Advice on Transition to adult care Advice from experts in the field of cystinosis> Download (.pdf)