Resources

Not actual patients
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Overview

Living with cystinosis can be challenging, so support is vital for the patient, caregiver, and family. Although cystinosis is a rare disease, there are resources to help your patients manage ocular symptoms, as well as educate and support them.

Sharing helpful information with your patients can help them navigate the complexities of this disease.

Tools and Guides

Photophobia and Eye Symptoms Tracker

Keeping track of the progression of light sensitivity and other symptoms is a good way for you and your patient to assess the status of corneal crystal buildup. Share this Photophobia and Eye Symptoms Tracker with your patients so they can understand changes over time.

Photophobia and Eye Symptoms Tracker
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Coordination of Care

Resources for your patients

Download this coordination of care resource for your patients.

Coordination of Care Resource

Cystinosis Organizations

Help patients stay connected

Having social support may help to improve patient well-being and foster the ongoing ability to manage challenges.

Cystinosis Research Network logo
Cystinosis Research Network / www.cystinosis.org

Cystinosis Research Network is dedicated to supporting and advocating for research, providing family assistance, and educating the public and medical community about cystinosis.

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Cystinosis Research Foundation logo
Cystinosis Research Foundation / www.cystinosisresearch.org

The Cystinosis Research Foundation is dedicated to finding better treatments and ultimately a cure for cystinosis, and to educating the public and medical community to ensure early diagnosis and proper treatment.

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National Organization for Rare Diseases logo
The National Organization for Rare Disorders (NORD) / www.rarediseases.org

NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

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Center for Chronic Illness logo
The Center for Chronic Illness / www.thecenterforchronicillness.org

The Center for Chronic Illness sponsors a web-based support group for adults with cystinosis called Living with Cystinosis.

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