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.
- September 19 at 5pm EST / 2pm PST – Caregiver Connect: Kids under 18 years old
- UPDATE September 26th caregiver session has been combined with the September 19th caregiver session
- September 29 at 7pm EST / 4pm PST – Cystinosis Basics with Dr. Larry Greenbaum, Emory School of Medicine
- October 6 at 7pm EST / 4pm PST- Cystinosis and Mental Health featuring licensed psychologist, Dr. Cortney Taylor Zimmerman
- October 14 at 7pm EST / 4pm PST – Cystinosis Gene Therapy and Research Update with Dr. Paul Grimm, Stanford University and Fernanda Copeland, Head Patient Advocacy and Engagement at Avrobio
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 firstname.lastname@example.org.
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.