Support and Resources for Your Practice and Patients

Cystinosis is a rare disease, but resources and support are available to help with diagnosis and management.

Review resources to help manage cystinosis in your patients.

Treatment Impact Visualizer Tool

See the complications of untreated or undertreated cystinosis, and learn strategies for promoting treatment adherence.

View the Treatment Impact Visualizer

Virtual Reality

Access a virtual reality experience designed to show you what life can be like for your patients with cystinosis.

View The Cystinosis Reality

Cystinosis in Adults

View this quick-reference booklet to support your own ongoing conversations with your adult patients with cystinosis.

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Adherence Discussion Tool

Use this clinician tool to help facilitate conversations with your patients about cystinosis treatment adherence.

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Share these helpful resources with your patients.

Cystinosis Fact Sheet

Use this fact sheet to help your patient and their caregivers start a conversation about cystinosis with others.

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Adult Resources

Share these resources for adults living with cystinosis and their caregivers to learn more about cystinosis and managing day-to-day challenges.

View Adult Resources

Youth Resources

Provide caregivers of young patients with tools to help understand and explain cystinosis.

View Youth Resources

Cystinosis United

Cystinosis United is an online community that shares tips, tools, and advice for people living with cystinosis.

Visit Cystinosis United

The Hangout

Explore this interactive tool that helps teenagers and young adults living with cystinosis manage day-to-day challenges.

Visit The Hangout

Browse online organizations that offer support and resources for patients and families living with cystinosis.

Angel Aid

Angel Aid is a community of caregivers for individuals with a rare disease like cystinosis. Caregivers can find support, resources, and tools to help cope with the unique challenges they face.

Visit Angel Aid

The Center for Chronic Illness

The Center for Chronic Illness (CCI) is a nonprofit organization committed to bringing together individuals and their families who live with a chronic illness. CCI hosts support groups for various chronic illness including cystinosis.

Visit The CCI

Cystinosis Research Foundation

The Cystinosis Research Foundation is a non-profit organization dedicated to advancing research and finding a cure for cystinosis. The foundation funds scientific initiatives, fosters research collaborations, and supports individuals and families affected by cystinosis.

Visit the CRF

Cystinosis Research Network

The Cystinosis Research Network (CRN) is a nonprofit organization committed to advocating cystinosis research and supporting patients with cystinosis.

Visit CRN

Global Genes

Global Genes is a nonprofit organization that focuses on helping to remove the challenges of living with a rare disease that patients and their families may face.

Visit Global Genes

National Organization for Rare Disorders

The National Organization for Rare Disorders (NORD) focuses on promoting positive change for patients with rare disorders through education, research, and policy.

Visit NORD

Learn About Diagnosing and
Managing Cystinosis

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Experienced in Managing Cystinosis

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