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.
Virtual Reality
Access a virtual reality experience designed to show you what life can be like for your patients with cystinosis.
Cystinosis in Adults
View this quick-reference booklet to support your own ongoing conversations with your adult patients with cystinosis.
Adherence Discussion Tool
Use this clinician tool to help facilitate conversations with your patients about cystinosis treatment adherence.
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.
Adult Resources
Share these resources for adults living with cystinosis and their caregivers to learn more about cystinosis and managing day-to-day challenges.
Youth Resources
Provide caregivers of young patients with tools to help understand and explain cystinosis.
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.
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.
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 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.
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.