Open Registration – 2020 Cystinosis Virtual Meetups

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We are going virtual!

The CRN is introducing a series of virtual meetups taking place this fall. Available to individuals living with cystinosis and their families, the “meetups” are designed to provide cystinosis education, support and networking opportunities within our community.

Originally planned as in-person meetings, the COVID-19 pandemic has caused us to re-imagine this program. We look forward to this series which can now extend beyond U.S. borders and may be accessible for those unable to travel.

After registration you will receive a special welcome package* exclusively made for the 2020 Virtual Meetup series.

You are invited to register for any/all calls of interest by clicking the topic below.

Virtual meetups will require a smart phone or computer and are available in English. Separate registration forms should be completed for each topic. For questions, please contact our moderator at

Don’t forget to visit the Adult Leadership Advisory Board (ALAB) page for updates on podcasts and video calls created by adults living with cystinosis.

*Welcome packages currently available for U.S. residents only.