HCP tools and resources

HCP tools and resources

Useful tools

Below, you’ll find various resources to help you learn more about  nephropathic cystinosis.


Resources for patients

Discover Cistinosis (2)
Cystinosis booklet
Cystinosis video

Resources for healthcare professionals

Cystinosis Booklet (1)
Red Flag booklet
Checklist (1)
Cystinosis consultation checklist
Cystinosis clinical recommendations

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.


Disease background

Types of cystinosis and pathophysiology of nephropathic cystinosis

Find out

Identifying symptoms

Clinical characteristics of cystinosis through different life stages

Find out

Diagnosing cystinosis

Investigations required to support a diagnosis of cystinosis

Find out

General management

Recommendations for management and monitoring of cystinosis patients

Find out

Clinical recommendations

Explore the cystinosis Clinical Decision Support Programme (CDSP)

Find out

HCP tools and resources

Useful tools and resources for you and your patients