Special Programming

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The Cystinosis Research Network is proud to present original programming created for our community, by our community.

Learn more about each opportunity by clicking the links below.

  • Live Like Laura Fun Fund. Need help funding your next adventure? If you are living with cystinosis or have a sibling with cystinosis, the Live Like Laura Fun Fund may be able to help!  
  • Cystinosis Memorial Fund. In memory of the cystinosis warriors who have lost their battle, this program provides financing for technology and career support for teens/adults with cystinosis. 
  • Care Package Program. If you know a cystinosis individual or family in need of a pick-me-up, we will send a complimentary support/educational package their way.
  • Cystinosis Warrior Impact Program (CWIP). Created with a goal of helping each individual living with cystinosis, the CWIP program covers a broad range of needs. Don’t see what you are looking for here? Visit the CWIP page and email info@cystinosis.org for details.
  • Adult Leadership Advisory Board (ALAB). Made up of adults with cystinosis, this subcommittee lends unique patient perspectives and identifies opportunities promoting empowerment within the cystinosis and rare disease ecosystem.

If you have any questions, email info@cystinosis.org.