Tools and resources
Useful tools
Below, you’ll find various resources to help you learn more about nephropathic cystinosis.
Patient organisations
Join the cystinosis community
You don’t need to face the challenges of cystinosis alone. There’s a supportive community out there that’s eager to provide information, compassion, and advice. When you’re feeling low (and there will be times), a host of organisations and support groups is just a few clicks away to provide support for both patients and caregivers. Patient organisations and support groups often provide both information and support from others who have been through similar diagnoses as a family.
Links are provided below to sites that you may wish to visit to help you to get further support from others who have been through similar experiences.
International organisations:
Cystinosis Foundation (US based)
Cystinosis Research Network (US based)
Cystinosis Network Europe (CNE)
Local patient organisations in Europe and Middle East:
Cystinosis Foundation UK
Cystinosis Ireland
Leben Eben Cystinose Selbsthilfe (Germany)
Cystinose Stiftung (Germany)
AIRG Association pour l’information et la recherche sur les maladies génétiques rénales (France)
VML Vaincre les maladies Lysosomales (France)
Cistinosi Onlus (Italy)
AIRG-España (Spain)
Asociación Cistinosis Española (Spain)
Prorare (Austria)
BOKS VZW (Belgium)
RaDiOrg (Belgium)
AIRG (Belgium)
Cystinose Groep Nederland (Netherlands)
ProRaris (Switzerland)
AIRG (Switzerland)
Israeli Rare Disease Coalition (Israel)
