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 100% online and is free of charge.  

We’ve shifted from an in-person event to an online conference series and continue to be focused on providing an educational, supportive, and engaging experience from the comfort of your own home. The beat will go on!

REGISTRATION is now open. Click here to sign up! You can also view the latest agenda

Need help? 

Log In Instructions – English

Log In Instructions – Spanish

We look forward to seeing you in the virtual hallways. 

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.