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 jdicks@cystinosis.org 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.

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