Family Conference

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The Beat Goes On – 2021 Family Conference 

Our biennial summer conference took place July 16 – 18, 2021. It was provided 100% online and free of charge.  

The shift from an in-person event to an online conference series allowed us to continue to providing an educational, supportive, and engaging experience in spite of the challenges encountered during the COVID-19 pandemic.

The beat goes on!

With the help of our global cystinosis community (25+ countries), our first virtual conference was a great success. 

You can access the 2021 agenda and select recorded sessions from the conference via our YouTube channel

We hope you will join us in person in Nashville, Tennessee in July 2023. 

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.