HCP tools and resources
Useful tools
Below, you’ll find various resources to help you learn more about nephropathic cystinosis.
Resources for patients
Resources for healthcare professionals
Patient organisations
Patients don’t have to face the challenges of cystinosis alone. There are a number of local and international organisations that provide information, advice and support to patients and their caregivers, as well as connecting them with 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)
Explore the sections below to find out more.
HCP tools and resources
Useful tools and resources for you and your patients