Cystinosis Information Prescription

Information prescriptions contain information about a specific condition, possible treatments, care services, benefits advice and support groups. The aim is to provide you with information that is specific, comprehensible and timely. It is hoped that this will reduce unnecessary stress, anxiety or confusion about your condition.

The Cystinosis Information Prescription has been written by the Cystinosis Rare Disease Group.

You can download the whole Information Prescription here or choose from the individual sections below as required.


Overview for patients and families

Management of Cystinosis

Common Medications

Common Investigations

Cystinosis and Your Body

Looking after Your Eyes

Genetics and Inheritance

Transition from Paediatric Care

Young People with Cystinosis

Sexual Health and Fertility

Supportive Services

Welfare Services

Healthy Living for People with Cystinosis

Travelling with Cystinosis

My Healthcare

Cystinosis Information Prescription Version 1 Updated May 2014
Written by the Cystinosis Rare Disease Group