Family Gatherings

Series of Cystinosis Meetups

CPM Webpage

This fall we are hosting three Cystinosis Patient Meetups focused on connecting our cystinosis community. Open to cystinosis patients and caregivers*, the one-day events will provide an opportunity to meet and speak with experts and others navigating the disease. Discover new management tools and techniques and how to become your own advocate.

Draft agenda:

  • Welcome & Overview
  • Updates from a cystinosis expert
  • Advocacy group information
  • Support breakout session

To register for the meeting closest to you, click on the city links below.

Houston, TX
Saturday, September 8, 2018
8:00 am – 4:00 pm
Embassy Suites by Hilton Houston Energy Corridor

Indianapolis, IN
Saturday, October 20, 2018
8:00 am – 4:00 pm
Westin Indianapolis

Charleston, SC
Saturday, November 3, 2018
8:00 am – 4:00 pm
Hilton Garden Inn Charleston/Mt. Pleasant

We look forward to seeing you there!

* Children may attend but day care is not provided. Parents will be responsible for their care.


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