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An Open Letter to the Cystinosis Community

Interim CRN President, Tim Wyman, has written an open letter to the cystinosis community. You can read it here.

Angel Aid is currently providing free trauma-less needle poke wellness kits for the cystinosis community. Their “Buzzy” kits were...

Recordati Rare Diseases Inc., the makers of CYSTADROPS, launched a website to support the launch of the eye treatment...

Join hosts from the Adult Leadership Advisory Board (ALAB) for the Cystinosis Sessions video conference series – LIVE- on...

In April, the Cystinosis Network Europe adapted their international conference to the restrictions set forth by COVID-19. The result...

Learn more about the fundamentals of cystinosis during our Cystinosis Basics video meetup. Dr. Larry Greenbaum, Emory School of...

Advocating for rare disease sometimes feels like fighting an uphill battle. Living with cystinosis means you are 1 in...

Cystinosis Awareness Day is recognized as May 7th for the most commonly linked cystinosis mutation, the 57-kb deletion. This...

The CRN 2021 Family Conference will be hosted in Nashville, Tennessee (U.S). Please visit our events page for details...