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LLLFF Virtual 5K

On the one year anniversary of Laura McGinnis’ passing, the Live Like Laura Fun Fund (LLLFF) was launched. Laura lived life...

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Cystinosis Gene Therapy & Research Updates: Virtual Meetup

Learn more about gene therapy as it relates to the cystinosis community. Dr. Paul Grimm from from Stanford University...

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Cystinosis & Mental Health: Virtual Meetup

Let’s have an open discussion on mental health and living with cystinosis. Everyone within the community is invited! Licensed...

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Playback – 2020 International Cystinosis Family Conference 

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

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Cystinosis Basics: Virtual Meetups

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

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Caregivers Connect: Virtual Meetup

Caregivers of children with cystinosis under 18 years old are invited. Join us for a video conference to connect...

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Open Registration – 2020 Cystinosis Virtual Meetups

We are going virtual! The CRN is introducing a series of virtual meetups taking place this fall. Available to...

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CNE Moves International Conference Online

On April 25th, a free online conference is being provided by Cystinosis Network Europe (CNE) and Cystinosis Ireland. The...

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