Family Conference

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Ringing in the Future – 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.

We were honored to provide unique experiences throughout the conference, some of which we have highlighted below. A special thank you to all who attended, those who contributed to making this event a success, and each and every person who champions for improved treatments, improved quality of life, and a cure for cystinosis.

#CRNPhilly Hope Fence Lock Project

After receiving a lock, heartfelt sentiments were written on the back of each. One by one the locks clicked into place to form a “C”. This was our moment to reflect on friendships, hope, storytelling, and the disease that brought us all together.

 

Walk in My Shoes – A Cystinosis Documentary

The trailer for the first-ever cystinosis documentary debuted at this year’s CRN Family Conference. You too can walk with the Moore Family as they recount their cystinosis journey and the steps leading to their physically and mentally challenging Cystinosis Awareness Day fundraiser.

 

 

 

Facing a Bright Future: Cystinosis Comic Book Series 

Author, illustrator, and adult living with cystinosis, Kevin McCalla shares revealed the third and final installment of his original cystinosis comic book series. “Facing a Bright Future” ships free internationally. Sign up for your free copy.

 

 

2019 Photo Gallery

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