Family Conference

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The Beat Goes On – 2021 Family Conference 

Our biennial summer conference is July 16 – 18, 2021. It will be held virtually and free of charge.  

With the safety and health of our community in mind, we’ve decided to shift from an in-person event to an online conference series. We are focused on providing an educational, supportive, and engaging experience from the comfort of your own home. The beat will go on!

A draft agenda is available here.

If you are in the U.S. and need assistance with securing an internet connection or a laptop, please contact Jonathan Dicks about the PCs for People program at or call 513.394.0681. Teens and adults with cystinosis outside the U.S. can apply for technology assistance via the Cystinosis Memorial Fund

A Look Back – 2019 Family Conference 

Individuals, families, world expert clinicians, and industry partners came together this summer to help our cystinosis community “Ring in the Future”. The city of Philadelphia welcomed:

  • 80 people living with cystinosis
  • 9 different countries
  • 275 overall attendees

Families experienced a weekend filled with critical research updates from clinicians and international cystinosis organizations, opportunities for study participation, interaction with health care professionals, and a chance to meet old friends and make new connections. For those unable to attend, the live streamed sessions are now accessible on the CRN YouTube channel.