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Cystinosis Awareness Day – Family Meetup
May 4, 2024 @ 8:30 am - 4:30 pm
See you in Cincinnati, Ohio!
On May 4th, we are gathering for an in-person meet-up at the Cincinnati Marriott River Center. Join us for a day of connection, education, and celebration commemorating the 7th Annual Cystinosis Awareness Day. Registration is required and is now closed. Please contact Chelsea with questions at chelseam@cystinosis.org.
Draft Agenda
- 8:30a Registration + breakfast provided
- 9:00a Welcome
- 9:30a Family introductions
- 10:15a Dr Elizabeth Ames, University of Michigan: Genetics in Cystinosis + Q&A
- 11:15a Group photo
- 11:30a Our Mental Health, with Chelsea Meschke, LMSW
- 12:00p Lunch provided
- 1:00p Updates from CRN President, Jonathan Dicks
- 1:30p Goose chase activity
- 2:30p Patient Support session
- 3:45p Closing remarks + departures
If you would like to stay at the venue overnight, discounted rates are secured through this booking link.
We hope to see you there! A special thank you our sponsors:
