HCP Resources for Your Practice and Cystinosis Patients

Provider Resources

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.

Cystinosis in Adults

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

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Virtual Reality

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

Adherence Discussion Tool

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

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Transition of Care Experience

Follow a hypothetical patient as she transitions to adult cystinosis care and learn how her nephrologist and care team help.

Patient Resources

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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Support Organizations

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

Support and Resources for Your Practice and Patients

Provider Resources

Treatment Impact Visualizer Tool

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

Treatment Impact Visualizer Tool

Cystinosis in Adults

Virtual Reality

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

Virtual Reality

Adherence Discussion Tool

Transition of Care Experience

Follow a hypothetical patient as she transitions to adult cystinosis care and learn how her nephrologist and care team help.

Transition of Care Experience

Patient Resources

Cystinosis Fact Sheet

Support Organizations

Learn About Diagnosing and Managing Cystinosis

Consult With a Provider Experienced in Managing Cystinosis

Support and Resources for Your Practice and Patients

Provider Resources

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

Treatment Impact Visualizer Tool

Cystinosis in Adults

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

Virtual Reality

Adherence Discussion Tool

Transition of Care Experience Follow a hypothetical patient as she transitions to adult cystinosis care and learn how her nephrologist and care team help.

Transition of Care Experience

Patient Resources

Cystinosis Fact Sheet

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

Youth Resources

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

Adult Resources

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

Cystinosis United

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

The Hangout

Support Organizations

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.

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.

The Center for Chronic Illness

Cystinosis Research Foundation

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

Cystinosis Research Network

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.

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.

National Organization for Rare Disorders

Learn About Diagnosing and Managing Cystinosis

Consult With a Provider Experienced in Managing Cystinosis

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Treatment Impact Visualizer Tool

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

Virtual Reality

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

Transition of Care Experience

Follow a hypothetical patient as she transitions to adult cystinosis care and learn how her nephrologist and care team help.

Youth Resources

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

Adult Resources

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

Cystinosis United

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

The Hangout

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

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.

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.

Cystinosis Research Network

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

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.

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.