Cystinosis Warrior Impact Program

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A global initiative has been announced: the Cystinosis Warrior Impact Program.  

Our goal is to support, help or find a way to positively impact every single one of our 2,000 cystinosis warriors. 

Support can cover many categories including but not limited to: 

  • Mental health and wellness
  • Financial (scholarships)
  • Medical (support programs)
  • Education
  • Research opportunities
  • Networking (mentor program, connecting with resources to find a kidney donor, find a doctor, etc.)
  • Translation services
  • Advocacy and policy work and more

Getting help for yourself, your family -or- other cystinosis warriors

  • Contact us. Email and we can confidentially discuss how to support your needs.
  • Referrals. Do you know a cystinosis warrior in need? Provide them with our email to get started
  • Resources. Know of a great program or resource the cystinosis community qualifies for? Send it our way and we can expand the cystinosis resource library
  • Share. Help us spread the word to reach even more cystinosis warriors 


This is a long-term goal and will only be possible with the assistance of our network of patients, caregivers, loved ones, partners, and healthcare professionals. We hope you feel empowered to reach out to us or take part in the lives of our rare disease community. 

Thank you for joining us in this fight!